Meet Our Heroes

Why are these children so special?

Through the power of photography we are working to bring some awareness to some often hidden diseases the young people of the world are facing each day. These children are not your typical everyday kids. They each have a special story to share. No two stories are the same, but they each bring hope and inspiration to all who take time to read them. We invite you to celebrate with us as we honor our team of heroes from around the world who would like to share their stories with you.

*Children who were photographed in the fall of 2011 will join our 2012 team of heroes! Check back to see our new team grow!*

Meet our 2012 Team Of Heroes

 

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Hi, My name is Cameron. I am 5 years old and I have a condition called Progeria. It makes my body age faster than it should but it doesn’t stop me from doing all the things I love to do. Here is my story: At the age of 1 month, I had a suspicion something was wrong with Cameron’s weight gain. I breast fed him and he would pull away from me after just a short time eating. We had several friends and family members with kids born around the same time and they were gaining weight at an amazing pace. Cam was born at 37 weeks and was 6lbs 2oz. We were told he would make up for his low weight quickly. He never did. Two weeks later we checked Cameron into Childrens Memorial in Chicago where we were able to see a GI specialist, Geneticist and Neurologist. We left thinking we would have a G-tube put in in a few weeks and were waiting for results of a few tests. We bought an infant scale and began weighing him frequently and recorded every feeding. After a couple of weeks, Cam began to gain weight at an alarming rate. Because of the weight gain, we decided not to have the G-tube put in. Shortly after this decision, Cam then contracted Bronchiolitus and lost 1-2 lbs in 2 weeks. We decided to continue the search for a diagnosis and headed to Children’s Hospital in Pittsburgh. The physician we saw there diagnosed him almost immediately with some type of Progeria. With our preliminary diagnosis in hand, we spent the entire night on the internet trying to determine which form of Progeria was the most likely candidate. After reading the stories and seeing pictures of the children on the PRF website, it was clear to us that Cam had the classic form, Hutchinson-Gilford Progeria Syndrome. We had a blood test confirm it 3 weeks later. Despite his condition Cam loves the pool, his family and friends, and running and playing like any other 5 year old boy!

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Andrew Aidan LeGar was born on December 05, 2009. He and his dog Beemer have been the pride and joy of their parents, Michelle & Roi ever since. He loves to take walks outside with his best friend Beemer, play with his Thomas the Tank Engine set of toys ( along with any other plane, helicopter, car, truck toy he can get his hand on) as well. For those that have met him, they see the soul of a mature adult in the body of a sweet,sensitive, loving boy. He is currently battling with a rare form of brain tumor called Atypical Teratoid Rhabdoid Tumor or ATRT. It is a rare brain tumor that effects less than 100 children a year in this country. We are confident that the Greater powers that be will guide the hands and minds of the great doctors at Memorial Sloan-Kettering Cancer Center to help us treat this rare condition and help AA get back on track to living the long and meaningful life that he is going to have. He has been an inspiration to us and we are sure he will be a vessel of inspiration to those in similar situations as he lives his life to the fullest. AA has endured multiple brain procedures, extensive chemo & radiation therapy and now has multiple tumors on his spine. The doctors say that there is nothing more they can do for AA and that his days with us are numbered from weeks to months. We now hope for a miracle from above.

-Please share our page and keep our hero Andrew in your thoughts- ITA

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Isabella was diagnosed with Stage 4 Neuroblastoma in October of 2007 when she was just 2 years old. In the last four year she has undergone countless surgeries, chemotherapy, radiation and painful experiment drugs. We transferred her care to Memorial Sloan Kettering in Manhattan during her initial diagnosis and have been traveling back and forth to NYC for the last four years. In that time, Isabella has relapsed 4 times, most recently in August 2011. All through treatment, Isabella has remained a happy and loving child. She loves her American Girl dolls, her kitty Jake and her Brother Grant and Sister Sophia.
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Xavier was born a mere 4 weeks early but spent 1 month & 2 days in two different NICUs. This was due to seizure activity, breathing issues, and feeding issues. He has been tested for everything under the sun and so far all results have come back normal. This has not ruled out the possibility of a diagnosis…we ae just still searching for it. He has been through two surgeries to repair some genitourinary issues and also a tendon release for his hips. Right now he wears a brace for his hips and also a helmet for plagiocephaly. He receives PT, OT, and vision services. We work on getting him to build muscle where he has low tone, help stretch him where he has high tone, and are also working on feeding, playing, and “seeing”. He is grossly behind in his developmental milestones. We don’t know where this road is heading but we know where we’ve been. Although it has been a bumpy one, we can’t imagine our lives without our little guy in it.

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Shalynn was born 6 weeks early weighing 3lbs 6 oz by emergency c -section. We did not know before Shalynn was born that she had down syndrome, also after she was born we found out that Shalynn had a complete AVSD which needed to be repaired aS soon as she weighed a little bit more! Shalynn was in the NICU for 7 weeks after she was born and was finally able to come home. After 3 weeks of being at home shalynn was rushed into the hospital where she had 2 cardiac arrests. Immediately after that she was flown to the Children’s Hospital where she she spent the next 2 1/2 months. In the meantime she was in edmonton for her first heart surgery! She spent the summer at home and in Septemeber of 2007 she went back to Edmonton for her 2nd heart surgery. She has been in fairly good health since then, but she will be going for heart surgery in march 2012! She is a hero!

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Emma was born on May 29th 2009. I had a scheduled C-Section because during an ultrasound it was discovered that she had a mass in her abdomen. After she was born, an ultrasound was done on her and they decided that it was an ovarian cyst and we would just watch it over a few months. At 2mo. old she was hospitalized twice in a month for respiratory distress. At 4 mo. old, her eyes started spinning (nystagmus) and she was admitted to rule out Neuroblastoma. After a heart wrenching 3 days and a full body CT Scan, we were told it was negative, but that they didn’t know why she had the nystagmus. We were sent home with outpatient appointments to Opthalmology and Cardiology (they found a heart murmur during her 4 mo. well check). So, we were seen by Pediatric Opthalmology and they noticed that she was extremely farsighted and needed to wear glasses. Around 5 mo. old we finally had her Cardiology appointment. It was on Nov. 25th 2009. They examined her and did an Echocardiogram. That’s when we were told that she was in heart failure and had Dilated Cardiomyopathy with severe Mitral Valve Regurgitation. She was immediately admitted and put on IV diuretics and had a Heart Catheterization. Now, since she has three symptoms, (the abdominal mass, nystagmus and heart failure) we were sent to genetics. They felt that it was just a fluke that she had multiple things wrong with her and that they didn’t know of any associated syndromes. In my gut, I just felt that something was wrong, but didn’t know what. My mother emailed an old colleague that happened to be a pediatrician. He did some research and suggested that we look up Alstrom Syndrome. When I googled it, my heart sank. Just from reading the website (alstrom.org), I knew that this was what she has. Alstrom Syndrome is extremely rare, with only about 700 cases reported world wide since 1959. She is going blind and is extremely light sensitive from her retinas being destroyed. She can’t play outside during the day and we have to keep the lights in the house dim. This syndrome also had eventual deafness, obesity, Type 2 Diabetes and multi-organ failure/involvement among other symptoms. She receives PT, OT, Speech and Orientation and Mobility now for global developmental delays. She has come so far from where she started out and has a tough road ahead of her. Emma is such a sweet and funny girl but most of all, she is a FIGHTER!

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Connor was born full term and was healthy. Shortly after birth he stopped breathing while trying to bottle feed with a nurse. He was rushed to the NICU and there we stayed for about a month. He had genetics testing done and we found out he has a rare genetic syndrome called SOTOS. He had a g-button surgery when he was 10 days old to help with feeding difficulities. He is now 18 months old and just got the button removed. He is getting Physical, Occupational and Speech Therapy once a week. He is making progress, but doing it all on his own timeline. Connor is the baby of the family with two older brothers and an older sister as well. We are so blessed to be his parents!

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Taegan Sage McFarland was born two months early on 6-3-04 by emergency cesarean section and required a one month NICU stay in order to learn how to breathe, eat and maintain her body temperature on her own. Taegan has cerebral palsy, spastic diplegia, periventricular leukomalacia (PVL), autism, and a genetic disorder called duplication of 8p23.3. Recently, she has begun mitochondrial disorder testing as several of her doctors are suspecting she may have a mitochondrial issue. Despite her various challenges, she is an active, spunky, good-spirited 6 year old. She is adventurous, curious and always on the go! She loves being outside feeling the wind blowing through her hair. She loves to swing and would be content to do so from dawn to dusk! She also enjoys swimming and music.She is a beautiful earth angel! She continues to enrich my life daily with the lessons she so eloquently teaches. God has truly blessed me with a miracle…my precious daughter.

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After my husband was diagnosed with cancer, we decided that we wanted to try to have a baby since we were not sure if we would be able to have children after his treatment was over. I only had 9 days to get pregnant before he started chemotherapy, and amazingly, I did! I had an uneventful pregnancy, and I gave birth to Dominick on September 27, 2008. Everything seemed fine, but he was sent to the NICU due to low blood sugar. He was kept in the NICU because of an infection. We soon found out was actually a blessing. It was during that time that they detected a heart murmur. This lead to an echo, which lead to a diagnosis of Shone’s Complex (multiple Congenital Heart Defects including: coarctation of the aorta, bicuspid aortic valve, and mitral valve stenosis). Dominick was then transferred to another hospital. At six days old he had closed heart surgery to repair the coarctation of the aorta. He continued to thrive until he was about six months old. At a routine cardiology appointment we found out that Dominick had a recoarctation which would require a balloon angioplasty. He recovered quickly, but later that summer we found out that Dominick had developed Subaortic Stenosis (tissue was growing under his aortic valve and was causing stress on his heart). We were told we had to “wait and see” with this since removing the tissue is not a cure. This next intervention would have to be open heart surgery. Unfortunately, removing the tissue usually only resets the clock for the next surgery, as the tissue has a high occurrence of growing back. In August of 2011, we found out that Dominick’s time for open heart surgery had come. He was scheduled for surgery on October 5, 2011, which was just days after his third birthday. Dominick showed no outward signs of needing surgery, so it was extremely difficult handing over our son for open heart surgery when he appeared perfectly healthy. To our amazement, he breezed right through the surgery. Nothing can really slow Dominick down, so it was somewhat of a challenge trying to make him rest while he was in the hospital. In fact, just days after surgery, he was running around in the garden outside! Thankfully, we were home less than a week later. Since then he has started preschool, and he is very excited to be welcoming a baby sister in March. We are so proud of everything he has overcome. Dominick is truly our blessing!

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Haley was born on February 24,2010 at 11:01 pm. We had no idea that she had Down Syndrome until they found she had complete AV canal defect two days later. All we heard from doctors was all the things she would be unable to do. She has far surpassed any doctors expectations not to mention her parents and other family. She walked at 15 months, Signs 6 different words and got through her heart surgery with flying colors. She has brought our family close together. She is truly our angel.

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We had expected the birth of a very healthy little boy, our second son when he was born on September 30, 2009. However, we were shocked when our little Bennett was born gravely ill. Bennett was rushed in to emergency surgery within 12 hours of birth due to meconium ileus and a perforated colon. A week later, while still in the NICU, Bennett was diagnosed with the fatal genetic disease Cystic Fibrosis. We were devastated. Cystic Fibrosis (CF) severely affects the respiratory and digestive system of the body. There is no cure for Cystic Fibrosis. The life expectancy for those with CF is 37 years. We knew almost immediately that Bennett’s diagnosis was going to change our life forever. After 40 days in the NICU, Bennett was discharged from the hospital with an ileostomy. After less than a week home, Bennett was readmitted to the hospital for “failure to thrive.” Children with Cystic Fibrosis often have a very hard time maintaining a healthy weight so Bennett was given a gastric feeding tube in his belly to help him gain weight. At two months old, Bennett was readmitted to the hospital to remove his ileostomy. Bennett seemed to improve dramatically after being hospitalized in December 2009 but two years later, Bennett underwent surgery to repair issues with rectal prolapse, a common complication with Cystic Fibrosis. Bennett takes more than 8 medications and over 12 pills per day. He spends almost an hour per day undergoing chest percussion therapy and nebulizer breathing treatments. Thankfully, Bennett has not had any issues with his lungs. However, Cystic Fibrosis is a progressive disease that gets worse over time. Lung damage is the primary reason for death in most CF patients. This is why it is important that Bennett maintain healthy lung hygiene, sometimes requiring IV antibiotics and week long hospital stays. Bennett is currently being followed by the CF Clinic at Children’s Medical Center in Dallas, Texas. While Bennett has had a very rough start to his life, Bennett’s early diagnosis has allowed for his treatment to begin almost immediately from birth. This gives us the confidence that Bennett has a good chance for treatment of this life-threatening progressive lung disease. We are so thankful for her kindness and for those who support our fight again Cystic Fibrosis, our fight to keep Bennett alive.

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Annya Elizabeth was born on march 31st 2010. For the first month of her life she was a normal happy baby but at one month old we got the call that would forever change our lives. Annya had tested high on her newborn screening for cystic fibroses. After some more testing it was determined the did in fact have the life threatening disease. we were heart broken. Cystic fibroses (cf) is a progressive illness that affects the lungs and digestive system. It causes thick sticky mucus to build up in the lungs and other organs and makes it a struggle to breath. With cf something as simple as a cold can easily turn into something more serious and land you in the hospital for weeks at a time. At 13 months old annya underwent surgery to have a feeding tube placed as she was unable to gain weight on her own, another symptom of cf. Annya takes many medications every day as well as breathing treatments and physical therapy to keep her lungs strong. Even threw it all Annya is an amazing little girl that melts your heart with her sweet smile. I pray that one day soon a cure is found and my baby girl can live a long healthy life <3

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Meet Bella-our little rock star who lights up the room with her magical smile and sparkling eyes. Bella was born at 40 weeks after an uncomplicated pregnancy. We were overjoyed to add a girl to our family of two boys. As the weeks went on, we began to have some concerns. Bella didn’t track objects or focus on people, she wasn’t rolling, and continued to miss milestones. At 2, Bella is still not sitting independently due to her low trunk control. We hear words like “challenging” “a mystery”, and “complicated” all the time by medical professionals in regards to Bella. Her main diagnoses as of now include a cortical visual impairment, hypotonia, and epilepsy. She has problems swallowing, and a majority of her nutrition is through a g tube. We are currently undergoing testing for what our neurologist describes as “worst case scenario” for metabolic conditions. Through it all, Bella has continued to be the light of our lives. She works harder than most 2 year olds to do everyday things most people take for granted. Bella is in therapy (physical, occupational, speech and feeding) 4 times per week, and through all the blood draws, tests, and medical procedures she continues to amaze us with her resilient spirit, and contagious smile. This may not have been a journey we ever imagined ourselves on, but we love this little girl to pieces! She truly is an inspiration to all of us to not take anything for granted.

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Tatum Shupe was born with a heart defect and had to get open heart surgery at 5 months of age. She was also diagnosed with Angelman Syndrome at 5 months of age after countless hospital/doctor visits. 1 out of 15,000/20,000 people are diagnosed with this neuro-genetic disorder. This disorder involves lack of speech, balance issues, developmental delays, seizures, sleep disorders, etc. All of this being said she requires intensive therapy. On a good note people with Angelman Syndrome are generally very happpy people which Tatum is. Her name means bringer of joy and that she is. She loves to laugh and her smile lights up the room.

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Meet beautiful blue eyed Rhyer! This little hero has been through a lot in his short 3 1/2 years. Diagnosed with Hypoplastic Left Heart Syndrome, Rhyer has already suffered a massive stroke and had 3 open heart surgeries. At one point we were told he may never sit-up or walk. Hypoplastic left heart syndrome occurs when parts of the left side of the heart (mitral valve, left ventricle, aortic valve, and aorta) do not develop completely. The condition is congenital (present at birth). Rhyer is really more then a hero, he is a miracle. People can’t always explain the amount of joy and happiness they see in Rhyer. He has a sparkle in his eyes and a smile that would melt anyone’s heart. Despite the hardships his family has been through the amount of love they share for each other is truly inspirational Rhyer has so much heart and so much love!

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Say hello to this beautiful hero! Elissa was 3 weeks old when the pediatrician told us that her head was growing at a faster rate than it should. After some testing, we discovered that she had Hydrocephalus. Hydrocephalus is due to a problem with the flow of the fluid that surrounds the brain. This fluid is called the cerebrospinal fluid, or CSF. It surrounds the brain and spinal cord, and helps cushion the brain. (water on the brain). Elissa’s first brain surgery was on Halloween night 2002. Instead of her bumble bee costume, she wore a hospital gown for her first Halloween. Elissa is now 8 years old and has spent endless weeks and weeks in the hospital. This past summer she underwent her 22nd surgery! She is so brave! Elissa always has a smile on her face and a song in her heart.

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One-year-old dylan has a scar that symbolizes strength & love, amidst struggle. Just one day after his birth, newborn Dylan was diagnosed with congenital heart defect. Unable to breathe on his own, he was placed on a ventilator, transferred to another hospital, and underwent angioplasty for his pulmonary valve. For the next three months Dylan’s health steadily declined as he faced serious issues, ultimately leading up to open heart surgery. That open heart surgery was successful and he has been home, happy & thriving since last fall. He is looking at another surgery around 3 years of age. Dylan is such a fighter and is living life like any other child. Just days following the surgery on his pulmonary artery Dylan was doing something he had never done before — smiling. since then, Dylan has grown into a happy, healthy, and strong little boy who just celebrated his first birthday — everything his family could ever want for him!

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Meet Beautiful SuLe! SuLe was adopted into our family from Beijing, China, in January 2009. Her name means “the reawakening of joy” and it fits her perfectly. She is a beautiful, outgoing little girl who loves art, music and posing for pictures. She has a long medical road ahead of her, with ongoing doctors visits and many other challenges. She has scoliosis, spina bifida, and limb difference, although just talking to her you would never know. She is just the sweetest little girl, full of spunk and laughter. She is quite the actress and model too! I cannot believe how brave she is, truly an inspiration to all of us. Everyone who meets SuLe agrees that she is an incredibly inspiring person who lights up the room wherever she goes!

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When Kaysia came into this world, we had no idea what she (or us)was about to face. After discovering she contracted septicemia during delivery, she was rushed to the NICU. The next day we were informed she had the infection in her blood, a heart condition, and they were also sure she had Down syndrome. This came as a complete shock to us since we had a textbook pregnancy with no complications and we were both in our early 20′s with no risk factors to even be tested. Still, a test confirmed the diagnosis a week later, as she still lay in intensive care. Fast forward 5 years and we look at Kaysia today. She has gone through so much already: 8 surgeries, 3 hospital stays, severe and undiagnosed GI issues, ear disease, absorption issues, clostridia infections, and the list goes ! on. She did not walk until she was 43 months and still cannot run or jump. She was also diagnosed with sensory processing disorder. But NONE of this stops Kaysia from being who she is. She is amazingly confident, self-assured, and lights up any room she enters. She is also has incredible pre-literacy skills, and is able to sight read, recite phonetics, spell words from memory, partake in swimming and horseback riding lessons and gymnastics. We are still fighting for her health and we have never given up, even when the doctors have. Why? Because Kaysia showed us how to keep going no matter what obstacles come in your way. She has taught us to be more forgiving, patient, compassionate, and tenacious. We are simply better people because she is in our lives.

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Five year old Molly Dunne collapsed on her first day of kindergarten, September 20, 2010. She was transported to a local children’s hospital via ambulance and then released with instructions to see a cardiologist. The next night, Molly’s mom, Kristen, followed her mommy instincts and took her back to the hospital because she didn’t like the way Molly’s breathing sounded. Molly was admitted and the next day was diagnosed with Pulmonary Hypertension, a progressive and incurable disease affecting the blood vessels from the heart to the lungs. On September 24, Molly suffered a series of hypertensive crises and went into cardiac arrest. Molly was placed on a heart/lung bypass machine (ECMO) and eventually transported to Children’s Hospital of Pittsburgh. In Pittsburgh, Molly became only the second child in the US to receive an artificial lung called a Novalung. The Novalung allowed her heart and lungs time to heal enough to work on their own again. After 25 days, the Novalung was removed and Molly’s own organs took over again. Unfortunately, the cardiac arrest left Molly with a serious brain injury, and she spent 6 months in the hospital receiving care for her PH and rehabilitation for her brain injury. During that time, her family also learned that she had Hereditary Hemorraghic Telangiectasia and that this likely caused the PH. HHT is a multi-system blood vessel disorder that can affect various organs in the body. Molly was finally discharged in March, and now her family, including her older brother and twin sister, are beginning to navigate life with a medically fragile child. Molly requires constant care, including a 24 hour a day, 7 day a week IV medication that goes into a central line in her chest. Her parents are responsible for mixing this medication and giving it to Molly everyday. She has regained many of her skills, despite the original neurology assesment that her brain injury would prevent her from seeing, speaking, eating, or moving voluntarily. Molly’s family was told over and over that Molly’s chances weren’t good, that she may not survive and if she did, she wouldn’t live anything like a normal life. Molly has beaten these odds, and then some. Molly is still undergoing rehab therapy but she is able to walk with the assistance of a walker, she is eating, she can see, she can play with her siblings and more. Molly is a true miracle!

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Isabelle has been dealing with PIDD (Primary Immune Deficiency Disease) her whole life. She was sick non stop as an infant and we struggled to find an answer why. At the age of 2 her peditrician started leaning towards an immune defiency. After two more years of non stop testing and illness she was finally diaganosed. So at the age of four Isabelle started receiving weekly infusions of human plasma. The infusion takes 3 hours to go in three different sites on her small body. This plasma “lends” her an immune system to help her make it through the week. Without these infusions Belle would be very sick and most likely unable to attend school or do any normal actvities. But with them she is able to do so much and live a pretty active life. To say she is our hero would be an understatement. She is the most amazing child and always looks at a challange with determination. This road has been tough and with no end in sight I am sure it will continue to be a cha! llange. But with an amazing child like Isabelle leading the fight there is no question that amazing things will be at the end of her rainbows no matter what path she has to endure to get there.

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My son Logan was born perfectly healthy and weighed a whopping 8lbs 14oz. A week after we brought him home, we got a call from the hospital that his newborn screening was abnormal and we had to get further testing. Logan was diagnosed with Medium-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (MCAD). This condition prevents him from converting some fats to energy, especially during periods of fasting or illness. Complications of MCAD include seizures, breathing difficulties, liver problems, brain damage, coma, and sudden death. His geneticist says that Logan’s gene pattern is a bit different than most kids he sees with MCAD, and if we are lucky he may be asymptomatic, but until he has his first episode, we don’t know. We count our blessings everyday that he seems to be asymptomatic, but we are also very dillegent about not allowing him to go without eating or a bedtime snack and keeping a glucometer close on hand. Though he appears to be healthy, his diagnosis has changed our lives in many ways, including me leaving my career to be home with him. Shortly after, my husband lost his job and we ended up leaving our home in Arizona and moving to Wyoming. Logan is truly a hero and reminds everyone around him how special life is.

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Elisyn is 4 years old and was born in China. She has a very severe and complex heart defect. Dextracardia, large VSD, interruption of her aortic arch, PFO and pulmonary hypertension. She came to us through the blessing of adoption. She was given an award at her orphanage for the kindest heart award, and I completely agree. She is sweet, funny, loving and extremely smart. Since coming home, she has had a lot of medical exams and procedures to see if her fragile heart and lungs could withstand a corrective repair. Through it all she has remained strong and never fussed. Instead she is very cooperative with all of the medical professionals. We are so blessed and proud to be Elisyn’s parents, and we pray that there will be a glimmer of hope for our daughter. She deserve! s the chance at life she has never been given.

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Meet our sweet baby girl, Ellie Kate. Ellie was diagnosed with Turner Syndrome prenatally and came into this world kicking and screaming despite having only a 1% chance of surviving to term. Turner Syndrome is a chromosomal defect that effects only 1 in about 2500 babies (only girls) and is almost always fatal to a fetus. While cognitive function for girls affected is typically normal, Turner girl’s have difficulites with growth, are almost always infertile, and commonly have heart defects. Just after Ellie was born, cardiologists at Children’s Hospital confirmed that Ellie’s heart was special. They noticed that she had a coarctation (narrowing) of her aorta, a bicuspid aortic valve, and a subclavean artery in need of repair. Just five days after she fought her way into the world, Ellie bravely went into the scary operating room to have her heart surgery. She spent the following few weeks in the hospital, and while there is a chance that she may need additional procedures to address her heart defect again in the future, as of right now, her heart seems to have recovered beautifully. Ellie’s future living with Turner Syndrome is unknown, but what we do know is that she a tough little miracle fighter who has already beat the odds and brings so much joy to our lives everyday.

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Our little hero, Hayden. While still Pregnant we found out that Hayden had Down Syndrome and also a heart problem known as Atrioventricular canal defect. When Hayden was 5 Months old just weighing 10lbs he had open heart surgery. Hayden is now 5 yrs old and is a very energetic little boy who loves to play outside and with his younger brother. He loves school and making new friends. Hayden is as sweet as they come; he meets no stranger and loves everyone. Hayden Has truly been a blessing to our family!

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Emma Grace was born on December 17, 2009. Her Dad and I had an idea that she may have Down Syndrome from some early tests that were done but deep down I think I always knew. Emma had 3 holes in her heart and a bicuspid valve that should be a tricuspid. Two of the holes have closed and we hope the last one will as well and she wont need surgery. The valve is working well and it is being watched. She has hypothyroidism and reflux that she takes medication for to control. She is our miracle, and has blessed our family in so many ways. We love her extra chromosome and every little thing about her. Emma started walking at 20 months and I don’t think anything is going to stand in her way. She has taught me to slow down and cherish the little things as well as the big milestones. We had to wait a long time for our little Miss Em, almost 9 years but she has definitely been worth the wait!

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Mia has Translocated Down syndrome. She is the youngest of four children and has truly blessed her family. She is getting ready to start kindergarten this fall and is so excited to be going to a “big girl school.” She doesn’t let anything get her down or stop her, she either just keeps trying or finds another way to get what she wants to be done accomplished. She loves her family, friends, pretty much anyone she comes into contact with. She is a big helper to anyone who is in need of help. She loves being outside, singing, dancing, drawing and being with her siblings.

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Hughes is our third child and what a hero he is! He was born on May 1, 2011 and on May 4, we took him into the doctor because his daddy (a physician) thought he was breathing too quickly for an infant. He was checked out and quickly life flighted to Vanderbilt for the beginning of the rest of his lifelong diagnosis of Hypoplastic Left Heart Syndrome. In his four months, he has had two open heart surgeries, heart cath, angioplasty, stroke, seizures and many many other procedures. We are so thankful this was caught in time to have him live. This is the happiest baby, with all he has been through, one would think he would be so grumpy and sad, but not our little heart warrior!
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Rowenna is a sunny, smiley, little wonder of a baby. Her babbles and coos fill our house and she has a mischievous spirit that keeps us on our toes! Rowenna is also known as “Nosy Rosy” because she always has to be facing the action and loves to chime in with her opinion on it all. Rowenna has Down syndrome and was born with a Complete Atrialventricular Canal. She had her CAVC repair at 4 months and hasn’t looked back since! Our beautiful girl has already taught us so much about the transforming power of love and patience. She brings us such joy – we cannot wait to see what the future holds for our precious little sprout!

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What is a Hero? A hero can be many different things depending on who you ask. To some their parents may be their heros, to others it may be superman or a football star. Often times you see children pretend to be hero’s on the playground. But to me, my hero is my eight year old daughter, Olivia. And she doesn’t pretend to be a hero, she is one. She was born on December 19, 2002. This would be the day that we would learn that she was born with several rare Congenitial Heart Defects. The day she was born was the day that she began to fight for her life. She has gone through more in her eight years than most do in a lifetime. She was born with Coarctation of the aorta, pulmonary stenosis, mitral valve stenosis, and an enlarged heart. She endured open heart surgery at 6 months of age to repair two of her defects where she remained in the hospital for 3 weeks and will require more in the future. Everyday she takes numerous amounts of meds and has some limitations on what she can and cannot do. But she always smiles and tries her best not to cry and be brave when she gets a poke or test. She shows so much strength and bravery everyday of her life. She is the toughest little girl I know. In addition to her heart defects she also is going through testing for an enlarged liver and spleen and a possible bleeding disorder. You would never know by meeting her that she goes through all of this everyday. She shows her courage, hope and strength through her laughter, tears and all of her energy despite her illness, for that she is my biggest Hero, my warrior. Each child is born and most believe with a predetermined path created by God. Not one journey is the same and I believe when you add the element of a congenital heart defect to a c! hild – you have a Heart Hero. I am reminded that when I get do! wn and f eel like giving up of what she goes through and I know that I can get through it. No matter what comes her way she endures it and moves on to the next and never complains, always smiling, a true hero. My heart hero.

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Lydia is the sunshine in our lives. We found out at 22 weeks pregnant that she would have to undergo extensive open heart surgery within the first year of her life. She has since had that surgery, at 6 months old, and hasn’t let it slow her down a bit. She also has Down’s Syndrome, but that is just icing on a tasty little package for us! She’s is full of grace and beauty. She has a personality all her own; sometimes all sunshine, sometimes a tad bit stormy. She is the princess in our house and you best believe she has NO problem letting us know when things aren’t being done to her satisfaction. She babbles and coos, and even complains. She loves music, her brothers, cuddles and all the silly things that Mommy and Daddy do to make her smile. All in all, she is truly amazing and I could never imagine living the rest of my life without her in it. So for anyone who might be starting down this path, full of fear and uncertainty, I just have to say that this ride will be the ride of your life. Yes, sometimes it will be filled with difficulties, tears and even pain. But the rewards are greater than any that you could ever imagine! Don’t listen to what others tell you. Listen to the calling of your heart! It will never lead you astray! Lydia has led me down the path less traveled, and I have to say that its worth every single second.

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Abby is just 2 years young, but has already been through so much in her short life. When Abby was just 7 months she was diagnosed with type 2 PFIC (Progressive Familial Interhepatic Cholestasis), a rare liver disease. Her parents were informed that a liver transplant would be in her future. Things quickly progressed and at 16 months, in December 2010, Abby was listed for a transplant. Within a few weeks Abby’s family prayers were answered and they received word that a liver was available. Abby’s chance for a new life was just around the corner. Just before Christmas 2010 Abby recieved her new liver and I am told her health improved almost immediately! What a blessing. It’s been a year since Abby received her new liver and she is doing incredibly well and flourishing like crazy. (Happy dance!) She is truly and inspiration and a hero to all who meet her! Her smile and her personality are contagious!

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Meet Brave Heart Asher Griffin, our courageous hero! He is our little heart warrior born October 27, 2010 with a complex congenital heart defect (CHD), Tetralogy of Fallot with Pulmonary Atresia. We were unaware of Asher’s heart defect during pregnancy, so we were shocked and heartbroken when our sweet baby boy was born into this world fighting for his life. He has bravely endured 2 open heart surgeries and 3 heart catheterizations before his 1st birthday at Children’s Hospital of Philadelphia. He also has some developmental delays due to his heart surgeries and a PVL brain injury, but is making wonderful progress and reaching milestones daily through therapy. We expect him to recover like a champ and lead a life not defined by his CHD, but rather a life filled with wonder, adventure, and joy – the sky is the limit! Asher’s CHD will require life-long specialized cardiac care, along with heart surgery/procedures as he grows, but we are believing for miracle breakthroughs in medical research. Our faith in an amazing God and His powerful promises of healing give us peace and hope for this journey. He can take broken pieces and make masterpieces! Our lives drastically changed the moment Asher was born with a broken heart, but we are stronger, love deeper, and have faith that can move mountains because of this incredible trial. With every crisis comes opportunity. I have been so blessed to have joined with other heart families to offer hope, help, and healing to others through our experience and spread CHD awareness. Little hearts hold BIG hopes!

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Ryley has a rare and very complex congenital heart defect called hypoplastic left heart syndrome (HLHS). He had his first open heart surgery at 7 days old, followed by many ups and downs and 7 weeks in the hospital. Then we finally got to take him home. His second surgery was set for 4 months old, but due to infection he didn’t have it until 6 months… thankfully he was finally able to have it because his body really needed it. As with all HLHS cases he will have to have a third “completion” surgery with the possibility of more surgeries or a heart transplant in the future. Despite everything Ryley has thrived in every way and is the happiest and most loving child I have ever seen. Sure, he has to avoid places like daycare because of germs and he can’t run as long as some other kids, but he has never let his condition get him down and I don’t think he ever will. He is so active and full of life… he is definitely my hero.

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Meet Mary Grace Landis. We call her Gracie. She joined our family January 16, 2002. Gracie spent the first 5 1/2 months of her life in the NICU. Born with DiGeorge Syndrome she had a whole host of problems. The biggest one was with her heart. She had tetrology of fallot with pulmonary atresia. Gracie’s first heart surgery was when she was one month old, the second at 4 months, the third at one year, the forth at 2 years, and her fifth and final heart surgery was at 26 months. The doctor was able to reconstruct blood vessels from the heart to the lungs and also to repair the TOF, however the blood vessels in her lungs were very small and too few so she now has pulmonary hypertension. Her doctors didnt think she would live this long and say to enjoy every day that we have with her. God has touched her and she has been a blessing to our family. I was able to adopt her when she was 4. She is now 10 years old. She loves listening to music, singing, going on vacations, and hanging with friends and family. She is definatley a miracle, and a hero- on December 22nd 2011 Gracie became the most beautiful angel. She touched many peoples lives.

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Calla was born small but apparently healthy on June 7th, 2010. We were so thrilled to have a daughter! When I kept seeing “white eye” (leukocoria) on photographs, I took her in to check out her vision. After running the gauntlet of doctors, we were sat down and told she is legally blind. She has no central vision whatsoever. It was incredibly heartbreaking to know that my tiny 2-month old daughter would never be able to drive or read or do so many of the things that are “normal” in everyday life. The very next day, the doctors ordered blood tests. A week later our world changed forever when received the news that she had been born with ring chromosome 9. Ring 9 is an extremely rare genetic disorder: genetic material is lost from both ends of the 9th chromosome which then join to form a ring. With only 120 documented cases she is literally one in a million. No one knew anything about it and we were sent home with the only packet that could be found with any information — a list of the medical issues 20 or so individuals had faced. It was so frightening reading all the possibilities; her condition could affect virtually everything or almost nothing. We had no idea what was in store for our daughter! Suddenly her vision seemed a small matter compared to this great looming unknown. She is developmentally delayed and at 15 months is functioning at a 6-9 month level. Calla has had a G-tube placed due to chronic dehydration, failure to thrive, and oral aversion, and has had 2 glaucoma surgeries on her left eye with another fast approaching. She’s the strongest, happiest little trooper I know. Despite all the difficulties she’s endured, she has blown the doctors’ expectations out of the water. She compensates for her vision in ways that shouldn’t even be possible she loves people and is very interactive, is sitting independently and babbling and doing so much more than was originally thought possible! She loves to laugh and play with her brother, snuggle with mommy and daddy and explore anything and everything! She is so curious and so eager to learn! Calla is my hero. She is an absolute miracle and we know that she will continue to leave her doctors dumbfounded!

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Reece is a funny, smart, sweet, and busy little guy. The big excitement around here is that he is riding a two wheeler – no more training wheels! Reece was born with multiple congenital heart defects. After he failed his newborn hearing screen (three times) we were referred to audiology, then to opthamology, then urology, and finally genetics. At two months old he underwent open heart surgery to repair a large ASD and multiple VSDs. We were referred to our local ISD for PT and OT services for his low tone. He wears glasses for astigmatism and iris albinism (he calls them his “magic glasses” because they have Transitions lenses). Reece has been tested for several genetic disorders but so far he has no definitive diagnosis. Reece loves preschool, trucks, dinosaurs, an! d playing outside. He is the light and love of our lives; our little hero.

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Abigail was born on July 13, 2010. She was diagnosed prenatally with Down syndrome and an AV canal heart defect. She had open heart surgery at 3 ½ months old. She fits the meaning of her name and is such a joy! She reminds us to celebrate every accomplishment and to love everyone. She loves to laugh at her older brother and scoot around on her bottom instead of crawling! She inspires those around her and is a wonderful blessing in our life.

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On October 3, 2010 I was given the most beautiful gift in the entire world, my baby girl Audrina Soleil. On October 6, 2010 I was introduced to the world of Congenital Heart Defects (CHD). Audrina Soleil was diagnosed 3 days after her birth with a congenital heart defect called Truncus Arteriosus. When she was only 8 days old she underwent open heart surgery to correct her defect, as she grows she will need further treatments/surgeries. I still can’t describe the shock we felt when we found out about her heart. We had 4 ultrasounds that did not see the defect. Every prenatal visit I had the first and most eager sound to hear at each visit was the beating of her heart-which was always perfect and of course a beautiful sound to me. I thank my heavenly father for putting us in the right place at the right time so her heart defect was caught soon after she was born. Now we are a part of the Congenital Heart Defect world and what a beautiful group of fellow heart hero’s we h! ave met. I never knew that congenital heart defects are the number one birth defect and 1 in 100 babies will be born with a CHD. I am hopeful for my daughter’s and other CHD survivor’s futures due to advancements in research and medicine. I have found a calling in life to both educate the world about CHD and to support families receiving a diagnosis of a CHD. If you know of anyone needing a “shoulder to lean on” I will be there. God gave me the most incredible gift in the world, Audrina Soleil and I want to share her beauty and strength with others.

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Our beautiful daughter Gianna was born on September 10, 2003 @ 5lbs. 15 ounces. She was not thriving and growing in utero so my obstetrician performed a c-section 3 weeks before her due date. While being monitored in the NICU, the doctor detected a heart murmur. After further testing it was revealed that Gianna had a hole in her heart and Mild Aortic Insufficiency. But since they could find nothing else wrong, they told us to take her home and follow up with a pediatric cardiologist. So we took our tiny peanut home and started to adjust back to a normal life. Only problem is, Gianna was miserable, cried constantly, and would not sleep or eat. Swallowing even her formula proved difficult for her. When she did eat, it came up within minutes. She seemed as though she was just not thriving/growing as she should. We finally met a doctor in the practice that listened to us and referred us to a geneticist at The Children’s Hospital of Philadelphia. So in February of that year, we went to CHOP. Within seconds of sitting down, the geneticist told us our daughter had Williams Syndrome. It is basically a genetic condition where genes are missing on chromosome #7. I remember it like it was yesterday because although I was devastated when they told us, I also had a sense of relief knowing that we finally had a diagnosis for her. WS individuals tend to have high calcium levels which cause painful muscle aches, abdominal pain and poor appetite. That is why our beautiful baby girl was so miserable and crying..she was in pain. WS also causes developmental delays, low muscle tone, and learning disorders. Most individuals with WS have some sort of heart and blood vessel problems. So all the classic signs/symptoms were there, but we no one had put the puzzle pieces together. In fact, Gianna was the only WS child in the practice and none of them were familiar with it. WS individuals also have characteristic facial features that include upturned noses, puffy eyelids and full lips. Curly hair can also be a result of the WS and Gianna has had a head full since she was born. Through years of PT,OT and speech therapy Gianna continues to thrive. She has just recently started reading and we are working on math, which is very difficult for her. She attends school in an inclusion classroom with the help of a full time TSS who helps her stay on task. WS individuals are highly social to a fault. Gianna has no fear of strangers and will basically talk to anyone who makes eye contact with her. For this reason we have to always keep a close eye on her. Gianna is the heart of our family and makes an impression of everyone she meets. We are so proud of how hard she works every day. We love you, Gianna.

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Tiffany,age 12, was born with complex congenital heart disease(Hetertaxy Syndrome), consisting of a single ventricle, requiring multiple open heart surgeries since birth. Unfortunately the last 2 attempts at palliative surgeries were not tolerated but she miraculously survived. There are no further options for her as due to her very complex anatomy is not a candidate for a transplant. With all this,she remains a remarkable spirit who lives every day to the fullest and inspires us everyday.

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Alena is a beautiful little girl and angel, both inside and out. She is very loved by her parents and sister, and everyone that spends time with her is touched in a special way. Alena is loving, kind, empathetic, intelligent, talented, and has so much to offer the world. On March 15, 2010, Alena was diagnosed with Rhabdomyosarcoma, a rare childhood cancer. Alena was taken to the Doctor on Friday, March 5th because Mom noticed her normally flat tummy was increasing in size. After some testing it was determined she had fluid in her abdomen, called Ascites. Initial testing of that fluid revealed abnormal cells which worried mom & dad and called for additional testing. It was also found that a membrane in the abdominal cavity called an Omentum was very enlarged. When she also developed an increasing fever, she was admitted to Emanuel Children’s Hospital on Wednesday, March 10th. Alena spent a total of 10 days at Emanuel Hospital as the doctors put her through many tests and procedures to determine the cause of this unusual abdominal fluid buildup. During her stay at Emanuel awaiting a diagnosis, she celebrated her 10th birthday in her hospital bed on Thursday, March 11. On Friday March 12, about 2 to 3 liters of fluid was drained from her abdomen, and a biopsy on her omental tissue was taken to Pathology for testing. Alena was diagnosed with Group 4, Stage IV Alveolar Rhabdomyosarcoma which places her in the high-risk category. This is an aggressive soft-tissue cancer that affects children under 15 years old, and rare with only several hundred cases per year in the United States. We have lived with all hope and faith that, with the help of all the power of Heaven, she would be victorious over this disease and go on to live a long and wonderful life, but eventually this trial was more than she could bear and she sought her consolation with that which she truly desired – life in Heaven with Jesus and all of Heaven. She was extraordinarily gifted with earthly talents and treasures from Heaven through the power of the Holy Spirit. Alena quickly passed away on Christmas Day 2011, and I’m certain many angels accompanied her to her new Heavenly home, where there is no more sorrow or pain. Alena was truly and innocent victim of a most cruel disease, but she shouldered her cross with humility, patience, dignity, and an unwavering faith in God. She was an extraordinary person and left behind a legacy of love, goodness, and kindness, reflecting a life of true value and purpose. There is no replacing her, and we will always love and cherish her. We will always love her with an unconditional and everlasting love.

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Our 2011 Team of Heroes

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Meet beautifully sweet Reagan. At week 27 of my pregnancy my life changed forever. My daughter’s heart was racing and was starting to go in heart failure in utero. I was referred to a cardiologist who did further testing to find out that not only was her heart racing, but she also had multiple congenital heart defects. Reagan was born on August 20, 2009, and was immediately rushed to the cardiac ICU where they did an echo on her. Her diagnosis was coarctation of the aorta, three VSDs (holes in the heart), smaller bicuspid aortic valve, and a leaky mitral valve. Her first open heart surgery was when she was 6 days old to repair the coarctation and the put a temporary band on her pulmonary artery. She came home with us two weeks later. Come November she was not looking good and was not eating well. ! I took her to the cardiologist to find out that she was in heart failure because the band around her artery was too tight. She was airlifted to the hospital and she had her second open heart surgery on December 3, 2009. This surgery repaired her pulmonary artery and closed one of the holes in her heart. Today she is an active 20 month old and has hit all of her developmental milestones. She still sees a cardiologist every 6 months. She loves playing with her older brother Gerard who is 3 years old. She is truly a miracle and inspires me and everyone she meets.
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Our 9 month old daughter Gianna was diagnosed with an occipital encephalocele and hydrocephalus before birth. Upon her birth on September 24, 2010, she was also diagnosed with an extremely rare condition called Chiari Malformation Type III. This type of brain abnormality is typically “non-compatible with life”, and her doctors at the University of Kentucky have literally never seen another case like hers. She has undergone numerous tests and procedures thus far during her nine months of life including two brain surgeries. Gianna, however, is doing EXTREMELY well under the circumstances and is a true inspiration to our family. With having a baby with serious medical issues, as well as two other children (her brothers Dominic age 6 and Angelo age 3), things get busy. But we are thankful for every moment we have!
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Say hello to Ava! Our little girl was born with many surprises. She had severe airway problems and needed airway repair surgery. We thought having the airway surgery would improve her other problems. We were wrong. She still requires home oxygen at times. We took her to Genetics, who asked us to do a muscle biopsy to check for Mitochondrial disease. It came back positive. She has also been diagnosed with Eosinophilic Esophagitis and dumping syndrome. She’s severely hypoglycemic and nobody can figure out how to combat this. She’s on 24 hour continuous GJ tube feeds and her blood glucose will still drop under 30. Her specialists say she’s writting her own book. We strive daily to give her book a happy ending, even battling Mito and all the unknowns that come with this terrible disease.

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My name is Caleb, I was born on July 7, 2009 with a condition called Esophageal Atresia. My mommy and daddy were totally shocked by this. But they quickly got over it and started focusing on ME! I spent the first 9 weeks of my life in the NICU at CHKD in Norfolk, VA, I was able to go home for 5 weeks without being repaired. On October 27 I flown to Children’s Hospital Boston to be repaired by doctors Jennings, Linden, and Foker. It took over 3 weeks of stretching and 3 attempts before my primary repair. After almost 4 months in Boston I was able to go home to Virginia, only to return. After being home for 2 months The radiologist at CHKD discovered a TEF, and once again after getting sick and being in respiratory distress I was flown back to Boston for another repair with doctors Jennings and Foker. This was a turning point for me, the day before I left the hospital for the last time I started eating by mouth and I never stopped. After 6 months of no gtube feeds I was able to remove my gtube. I have had many up and downs including mild tracheomalcia and chronic lung disease from my many bouts with pneumonia. Today I am a very active and generally healthy 2 year old. I love being outside and running away from my mommy (sometimes she cant catch me for a whole minute). It makes me laugh so much when she chases me! I love my daddy’s motorcycle and can’t wait to get one of my own. I love eating especially broccoli, corn green beans, blueberries, grapes, fish, and hot dogs. To all my EA/TEF past, present, and future friends I send my love and support. Love, Caleb
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Tuesday Fiona Whitt was a happy and healthy 21 month old when her parents started to notice she was no longer the spitting image of her twin sister. She was not as pink and plump as she was a week ago, and her energy and appetite were on the decline. An appointment at the Center for Cancer and Blood Disorders at The Children’s Hospital, went from an earlier, misdiagnosis of anemia, to Stage 4 high risk Neuroblastoma, the most deadly and underfunded of pediatric cancers. Biopsy of an “enormous” tumor on her adrenal gland, led to Tuesday spending over a month in the PICU on life support. Against all odds, she emerged from the PICU and spent the following 6 months in and out of the Oncology ward at The Children’s Hospital in Colorado, where she stole the hearts of all who cared for her. Although Tuesday responded quickly to frontline treatment, she presented with a new and very aggressive tumor, four days before her stem cell transplant was to begin. Tuesday passed away in the arms of her parents, 5 weeks later on January 30, 2009. Tuesday is sorely missed by her parents, two older brothers, twin sister, grandparents, aunts, uncles, cousins, dog, and all who had the privilege of knowing her.

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Say hello to “Super Will!” Will was born several weeks premature and stayed in the hospital for the first 4 months of his life. During that time it was discovered that he has Tetralogy of Fallot, a complex congenital heart defect requiring open heart surgery. That surgery was performed when he was 5 months old. His heart is doing well now and only time will tell if he will need other repairs in the future. Due to a number of medical factors, Will requires a G tube for nutrition. He is working with a feeding therapist to learn to eat on his own. Despite his challenges Will finds a way to smile, shine, and spread love wherever he goes!
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Denim was diagnosed 5/8/2009 at 3 weeks old he had been admitted for 24 hr observation for a nasty cough and cloudy lung xray spent the night doing lung xrays blood work and nasal swabs. His cough seemed to get better over night and they didn’t find anything wrong but as they were doing rounds the morning we were to be released the Dr noticed his coloring… at this point I knew he was a little bit yellow but never thought anything about it he was only 3 weeks old thought no big deal. They told me they wanted to do 1 more test before we went home they wanted to check his bilirubin…Thinking the worst it would be would maybe be some time under a light I still didn’t think much about it. A couple hours later the Dr came back and told me she had ! called in a GI and explained the difference between direct and indirect bilirubin and explained that Denim’s was very high. Another hour or 2 passed and we met our GI for the first time a few minutes after that heard the words Biliary Atresia for the first time…… Denim had his Kasai at 5 weeks old and has had one bought of cholangitis other than that his labs seem better every time they’re drawn. Transplant hasn’t been mentioned since before his Kasai. He’s a happy healthy wild little boy who loves balls, animals (especially cats) and his sisters! But (there is always that but) Biliary Atresia is unpredictable and can change at anytime and we could still end up looking at transplant in the future… for now though we thank God for our little miracle boy!
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When we found out prenatally that Jackson had Down syndrome, we also found out that he had a life threatening condition called fetal hydrothorax, which is fluid in his chest cavity. As his condition became more dire, the doctors gave us a choice to have him prematurely, or let him pass in utero. On December 14th, 2007, at just shy of 34 weeks, Jack was born not only with hydrothorax, but hydrops and fluid in his belly. He required resuscitation and was put on a ventilator. He weighed just over 6 pounds, and roughly 2 pounds of that was fluid. They gave him a 20% chance of survival. After eight long weeks in NICU, he came home to us hooked to monitors and tube fed, only to be surrendered again 3 months later for open heart surgery to repair multiple VSDs. His first year was full of heartache and triumphs. Fast forward to the present, and no one would ever know of his ordeals, except for the scars scattered across his body like badges of courage. He is truly inspiring. We consider him such a miracle, such a fighter, and such a gift.
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Fiona was born at 36 weeks. We knew during the pregnancy that she had an elevated chance of having Down syndrome and her diagnosis was confirmed at birth. At two weeks of life Fiona’s breathing became rapid. She was diagnosed with a large VSD and a PFO. For the next three and a half months we struggled around the clock to add ounces to her tiny frame in order to prepare for surgery. On January 25th, 2010 we learned she needed surgery soon. She had maxed out on her medications, and feeding her was becoming more and more difficult. A two ounce bottle took 45 minutes to an hour, and more often than not she would bring the majority of it back up and then we would start again. Feeding every three hours around the clock became our lives, and family had to help out when my m! aternity leave was up. Fiona was asleep for more than 23 hours a day. On February 12th, I carried Fiona into the operating room and laid her down on the table and kissed my baby. The feeling walking out of that room is something I wish no parent ever has to feel, you can’t help but think you’re seeing your child for the last time, and for some parents, that is the reality. Fiona was a trooper through surgery and was extubated the next day. She began to eat and was actualy HUNGRY! You have never seen parents so happy to hear their baby fussing for food. Since she had been asleep for four months, Fiona was very much like a newborn. At 6 weeks out from surgery we resumed her physical therapy sessions and this time she was actually able to participate. Fiona is now a happy, chunky, and extremely loving 16 month old little bundle of energy. Although she is still small at 18lbs, she looks huge to us. She is crawling and is now beginning to pull to standing. You can’t help but smile when you see her. Fiona’s big sister Katie is her favorite person in the whole world, and the two are inseparable.
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Jack is two years old and has Cystic Fibrosis. He was born at 35 weeks and spent a month in the NICU and has been hospitalized twice in the last two years. He takes lots of medicine to stay healthy and does multiple vest and breathing treatments daily. It’s a lot of work to keep our little guy healthy, but he certainly doesn’t let CF keep him down! He is a typical little boy who adores his big sisters, loves playing basketball, reading books and getting into mischief! Jack is our little hero and we love him very much.
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Meet beautiful and joyful Abigail! Abigail is 8 years old. On Feb.11, 2011 I took her for a routine visit for a blood check. Abigail was born with Down Syndrome. She also was diagnosed with a transient type of Leukemia. This can happen to children with Down Syndrome. The Leukemia went away on its own. No medication was needed. Her oncologists wanted to monitor her for a few years to make sure it did not return. When I took her for her yearly check she was looking good and feeling good. To our shock her labs came back with the terrible news of Leukemia. She was diagnosed with ALL. This was a different type of Leukemia than what she had as an infant. Abigail has responded well to the treatment. She did have a very hard time with the steroids. After being on them for a few weeks she developed Diabetes. We had to learn about insulin and counting her carbs. She adjusted to getting her insulin very well. Once the steroids stopped her sugar levels went back to normal. Abigail also came down with a bug she just couldn’t fight on her own. So back to the hospital again. She has made many friends at the hospital so she really doesn’t mind staying. Abigail is such a delightful little girl. She has shown us how to keep going and fighting. She makes everyone she meets smile. We still have a year and a half of treatment left. I’m sure she will handle it well.
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Most people have never heard the term anophthalmia. For us, we learned the term when we were told at 19 weeks during an ultrasound that our baby girl’s eyes did not develop and that she would be completely blind. At the time we did not know if there were other issues or if it was just her eyes. We did a lot of waiting, wondering, and researching until our beautiful baby girl, “Faith” arrived 21 weeks later. Faith spent the first month of her life in the NICU struggling with feeding and oxygen issues. As time went on, Faith struggled in many other ways as well. We found out early on that Faith also has bilateral sensorineural hearing loss. Faith completely stopped eating when she was about 2.5 months old and was hospitalized several times for failure to thrive. A g-t! ube was placed to ensure that she was getting proper nutrition and to help her gain weight. She still primarily gets all of her nutrition via tube feeding. When Faith was about 3 months old, we got the results of genetic testing which confirmed that Faith tested positive for the SOX2 gene mutation. These test results helped explain and put into perspective all the struggles Faith was having in addition to the underdevelopment of her eyes. Faith has severe global developmental delays and is chronically sick. Despite the daily challenges, Faith has blessed our lives more than we ever could have of imagined. She is the sunshine in each day and has a smile that will melt your heart. We keep the faith that someday Faith will walk, talk, and eat on her own. We are so grateful for the opportunity to participate in this program. Without this program, this session would not have been possible for our family. We had our photo session on Monday and Faith was so happy and content the entire time. We did all the photos outside and Faith seemed to really enjoy the experience. We were very fortunate to have an awesome photographer, Amanda Zika. She definitely has a heart for working with special needs children and did a phenomenal job of working with our family. She is also very fast and efficient! The photos highlight the true blessing Faith is to us! They truly capture how precious and beautiful she is!
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Kaetlynn was born a very healthy 9 pd baby! Unfortuneatly we found out she would be the child with all the health issues. Her NF1 diagnosis was confirmed at around 9 mths old. With her multip cafe’ ol le spots (birth marks) confirmed she had it. “Neurofibromatosis” is a term that encompasses at least two distinct, hereditary disorders caused by abnormality in a gene. Neurofibromatosis type 1 (NF1) is the more common disorder, affecting about 1 in 4,000 people throughout the world. NF1 is characterized by developmental changes in the nervous system, skin, bones, and other tissues. Its most distinctive features are multiple benign, soft tumors called neurofibromas and patches of skin pigmentation called café-au-lait spots. NF1 can also affect nerves throughout the body, including in the brain and spinal cord. I was really hoping she would not but she is the only child of my 3 so far that have been diagnosed, but with a deep family history of the diease she pretty much had a 50% chance of getting it. She knows the outcome of her diease, but does not let that get her down. She knows God & looks to him for her strength.
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10 years ago Craniosynostosis revealed itself to us and seated itself in our lives. Some days its the large elephant in the room, others its the little mouse squeaking in the background. For us Craniosynostosis is always in our lives. Leigha has Muenke’s Syndrome which at first brought on the fears of her midface not growing correctly, concerns on how teeth would grow, the possibility of learning delays, the always persistent concerns of second, third, or more surgeries, and lastly the possibility of Leigha and her older brother having children with craniosynostosis due to the 50/50 chance of passing on Muenke Syndrome. Leigha is an awesome sister, she loves both her brothers passionately and she’s a great kid. Leigha is involved with many in her craniofacial community and ! has grown to be a beautiful girl. She is proud of her scar that runs ear to ear and doesn’t see herself as flawed. Although she is one in 2000, she has never viewed herself as different from anyone else and has told teachers and friends from the age of 3 that she wants to be a “Dr that fixes babies heads” when she grows up. Now at the age of almost 11, practically ten years past her first reconstructive surgery, Leigha faces a second reconstruction on her skull in May 2011. Craniosynostosis is an unpredictible birth defect, no specialist can predict how it will behave in each child, and although 80% of her skull and brain were grown around the age of two growth spurts through childhood continue to mold the brain and skull. Her skull has regressed to its presurgical shape which no puts her at risk for pressure on her brain as she enters more growth spurts in puberty. Although, her whole family is nervous to face another massive surgery in which her eye-orbits will ! be reshaped and built up, the front of her skull will be taken! apart a nd reshaped and plates, wires, and screws from her original surgery will be removed, we know that Leigha will be as strong as she was the first time through this operation. Leigha is her parent’s hero!
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Mira was born on Jan 27th 2009. She is a bright little 2 1/2 year old, she loves to play at the park, carry her bunny and green blankie around, and adores her 6 year-old sister, Rayne. She has overcome many things in her 2 years and she has one more heart surgery to come. She is currently at a hemi-fontan (heart operation stage) but has been open and closed 6 times! She was on the heart transplant list for 5 months but was able to come off on her own, with much improvement. She just learned to walk the day after her 25 month birthday, and is learning to like food. She has the energy of any other two year old (if not more), and does it all with half a heart and a smile on her face! She is the bravest, strongest little person.
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Hi, my name is Marissa. I was born at a mere 25 weeks gestation weighing 1lb 7oz. I was rescucitated at birth and placed on a ventilator to help me breathe. Over the next few days, I suffered grade III and grade IV intraventricular hemorrhages which lead to complicated, non-communicating hydrocephalus. My parents heard of me when I was about 3 months old and decided to adopt me. I was discharged from the NICU and into my new family on November 2, 2009. Since birth, I have been hospitalized dozens of times, suffered a third intraventricular hemorrhage in 2010, have had around 25 brain surgeries, 5 throat surgeries, 2 shunt infections, 1 blood infection and various other illnesses. I have also been diagnosed with West Syndrome (a catastrophic form of epilepsy), Cerebral Palsy and Cortical Vision Impairment. I also have partial hemiparesis and epilepsy and although I am globally delayed, I am a happy, silly, bright little girl who can put a smile on anyone’s face!
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William was born on July 21, 2009 at 9:52pm. I wasn’t feeling as much fetal movement as I normally did, so we called my doctor and she sent us to the hospital. They did an emergency c-section and delivered a 3lb. 13oz., 16 inch long baby boy who was in respiratory distress. We had no clue the sadness we would feel when we had to leave the hospital without our baby, the sadness that comes with seeing your baby hooked up to tubes and wires, the sadness you feel not being able to hold your baby because he’s so sick that the stimulation from his own parents touch does more harm than that good. We had no clue that for the first week we would only be able to enter our child’s hospital room wearing gowns and gloves and how well versed we would become in all of the medical terminol! ogy that you hear in the NICU. Everybody tried to be positive for us. Doctor after doctor, nurse after nurse told us that I had saved our baby by noticing the decreased movement and that he wouldn’t be here with us right now if we didn’t go to the hospital when we did. Friends and family called day in and day out offering to come visit, hoping that they could help support us in our time of need. Nothing helped ease our pain and sadness though, all we wanted was for William to be healthy and get home with his us, where he should be. While in the NICU, William was on a C-Pap for 3 days, had one “possible” seizure, severe edema, jaundice and spent 4 days under phototherapy, he couldn’t hold his body temperature, had 3 platelet transfusions, a spinal tap to test for infectious diseases, a MRI which showed an intraventricular hemmorhage and perventricular leukomalacia due to lack of oxygen, an eye exam where they found bleeding in his retinas and delayed gastric emp! tying which gave us a lot of feeding issues. After four weeks ! though, we thankfully got our wish of having William home with us! It was such a great day! Since then we’ve found that William has Cortical Visual Impairment, Cerebral Palsy, is developmentally delayed and is failure to thrive. On a positive note, William is an extremely happy little man who laughs and smiles all of the time. He is loved so much by his two sisters, Mommy, Daddy, grandparents and a ton of extended family and friends. We are heavily involved in therapy and see a team of doctors that are trying their best to help William become all that he can be. William is an inspiration to so many people, as he never gives up fighting these obstacles that have been put in his way.
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My daughter, Tara Anne, was born July 2001. She was three weeks early and we had no idea of the issues she’d be facing. At nine hours old, she was flown by medical helicopter to the nearest NICU Childrens Hospital due to possible seizure activity. I spent the next five days going to visit her instead of sitting home with my newborn. She was diagnosed with Hydrocephalus at 6mos old and had her first surgery at 10mos old. She had two more, to fix the scar from the first surgery, at 13 mos and 17 mos. She had another brain surgery at 4yo, she’s had the same Neurosurgeon since she was in the NICU, he follows her closely and she continues to challenge him too. She was diagnosed with Left-Side Hemiplegia CP at 3yo after three long years in Early Intervention with PT OT and Speech. She was diagnosed with Severe Verbal Apraxia at 4yo. She has mild Chiari Malformation. She had decompression Sept 2010, which delayed the pictures with our wonderful photographer. She wear AFO’s on both feet. She has a rare syndrome associated with her chromosome deletion. She’s also the happiest person anybody knows. Once someone meets her, they love her immediately and love to see her smile! She has two wonderful brothers, one older and one younger. They will forever be her protectors. We went on a Make A Wish trip to Disney World in May 2008. She still talks about her wonderful experience in Give Kids The World, the Princesses, all three parks and their first plane ride from NY! She has many wonderful friends in school. She loves to look at family pictures and loves Hannah Montana. She loves school and loves to swim all summer, good thing we have a pool to keep her busy. She loves her german shephard and cant wait for her birthday celebration this Summer.

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Meet Sweet Little Nigel! Born at 23 weeks gestation, weighing in at 1 lb. 2 oz. I was told by doctors that babies born this early are not viable, and that he may not live to the next day or the next week. Well, he did make it to the next day, and the next week! Nigel spent 250 days in the NICU. He had over a dozen blood transfusions and also underwent surgery for a perforated bile. He was at risk to be blind and deaf, but he was blessed to be neither. Nigel spent several more months in ICU, was reintubated and given a very short life span due to his CHD, Pulmonary Hypertension, and Chronic Lung Diease. Nigel has exceeded all the doctors expectations, including passing some of his milestones. He is home on oxygen 24 hrs of the day, takes several medications, along with breathing treatments, and physical and speech therapy during the week. He still faces more surgeries to repair his CHD and hernias in the near future. Nigel has a smile to brighten any room. He is beautifully and wonderfully made,and is truly a little miracle!

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Our son, Nate was diagnosed with type 1 diabetes at 14-months and our daughter, Sophia was just diagnosed with ulcerative colitis/Crohn’s Disease. Both are are autoimmune diseases. Nate is type 1/insulin dependent and wears an insulin pump that keeps him alive. We change his pump site every 3 days and check his blood sugar 10-14 times per day. He’s a brave little boy but he has a hard time when his blood sugar is high or low which happens a lot with a growing little boy. Sophia’s current treatment is a harsh round of steroids to try and control her current symptoms and then we will establish a maintenance plan to try and keep her disorder in remission. Sophie’s crohn’s is doing much better and she is one tough little cookie. She doesn’t feel good a lot of the time but she never, ever complains. She always has the sweetest smile on her little face.

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Sienna of Mahanoy City is a survivor. She gained that title in 2008, then not even 2 years old, when she battled cancer – and she has been earning that label every cancer-free day since. Sienna was just an infant when her parents, Shannon and Santino, noticed that she was not eating much and had swelling in her stomach. After doctor visits and tests, the news wasn’t good. Sienna had cancer. Mesoblastic nephroma-a type of kidney cancer, to be exact. Shannon and Santino feared they would lose their only daughter. The tumor weighed more than 4 pounds – a little less than half of Sienna’s entire body weight. Janet Weis Children’s Hospital oncologist Dr. Jagadeesh Ramdas suggested an intense chemotherapy plan that would begin immediately. Despite the difficult treatment regimen, Sienna remained very calm and collective. Her mother remembers being overwhelmed with the devastating events, but still finding solace within her daughter’s smile. “The whole time she was sick, she would just look and smile all of the time,” Shannon says. After seven weeks, chemotherapy had shrunk the tumor to half its original size and it was able to be removed surgically, although Sienna’s right kidney would need to be removed as well. While the surgery was deemed a success, Sienna’s battle wasn’t over. She continued thorough follow-up treatments with Geisinger Pediatrician Dr. Kane in Pottsville on a regular basis, with appointments 2 to 3 times a week. “The courage and strength of Sienna and her entire family is absolutely remarkable,” recalls Dr. Kane. “She always had a smile on her face every time she came into the office.” Today, Sienna is able to live a healthy life. She enjoys singing, dancing, and playing with her older brother, Sonny. “She took everything in stride,” Dr. Ramdas says. “Now, she is doing everything a young girl should be doing.”
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My husband and I always knew we wanted to adopt a child from China. After being blessed with our wonderful son, Carter, we started the process to adopt in March 2007. In August 2008 we saw our daughter’s picture on our agency’s website. We knew from the minute we saw her that she was our daughter. Even though she had been hard to place due to her medical conditions, she was born with a neural tube defect called an encephalocele and also has hydrocephalus, it was love at first sight and it really didn’t matter what her conditions were, she was our baby girl. Her file indicated that she had surgery for her encephalocele when she was about a week old, and after about a month long stay she was released from the hospital, with continued close monitoring of her hydrocephalus. We traveled to China in March 2009 to adopt our beautiful Charlotte. Charlotte is our sweet, silly, entergetic, charming, spunky, adorable, and kind little girl who is a perfect addition to our family.Because of Charlotte the sun shines brighter. Everyone that Charlotte meets is her friend, she brings joy to all those around her. At this time she is monitored by a neurosurgeon to keep tabs on her hydrocephalus. We really won’t totally know how her encephalocele impacts her until she gets a little older. Charlotte is our daughter in every sense of the word and we are truly blessed to be her forever family.
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Logan was born in March of 2007. 9 days after he was born, he was diagnosed with Congenital Adrenal Hyperplasia (CAH for short) He has the most life threatening form of CAH, which is known as “salt-wasting”. His adrenal glands (which sit on top of the kidneys) do NOT produce the cortisol his body needs and instead, it over produces androgens. (the male hormone) He takes medicine several times a day to provide his body with what it is incapable of making on it’s own due to his CAH. He gets his blood taken several times a year to make sure that he is receiving the proper dose of medicine. Too little of a dose can cause harm, just as too much of a dose can. He will have to take the medicine all of his life to keep his CAH managed. Since his birth in 2007, he has been hospitalzed at least once a year (for several days at time) due to complications with his CAH. He is always so happy and joyful despite all the blood tests that he has and despite all he goes through during his hospital stays.. He is rarely seen without a smile on his face. There is currently no cure for CAH, but we hope there will be someday. Until then, we are just happy that his condition is able to be managed so easily and we are thankful that we have a wonderful endocrinologist who always has Logans best interest at heart.. Logan is now 4 years old and is a very sweet little boy. He loves to read, and his favorite movie right now is the Toy Story Trilogy. He also enjoys playing with cars, coloring and playing with his older brother.
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Jeremy was born in Russia to whose parents were unable to care for him, for medical and social reasons. He was born at 31 weeks and placed in an orphanage after spending some time in hospital. We travelled to Russia in 2000 to adopt Jeremy and bring him home to New Zealand. Jeremy has a sister (Sophie) who we also adopted from Russia 3 year prior to Jeremy. Jeremy’s early years were difficult for us all, but Jeremy has grown to become a happy, funny, loving and much loved member of our family. Jeremy’s life will always be a challenge but his endearing nature will see him through … he is easy to love and brings much joy and laughter wherever he goes.

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Phoebe is love personified. She literally loves everyone who has the pleasure of spending time with her. When she hears a familiar voice approaching, the smile on her face lights up like a glorious sunset. She is non-verbal but she gets her message across with her very expressive face. Easy-going and patient most of the time, Phoebe has a determination like no other. When professionals said she’d never walk, she didn’t listen. She now uses a walker and literally jumps out of her wheelchair when given the opportunity. She’s endured countless tests and surgery, but it hasn’t hindered her love of life.
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Meet Brayden! When he was born, he had a unilateral cleft lip and palate. I had never heard of it before, and it scared me! I didn’t know he had it so I was really surprized, and no one, not even the nurses, were prepared or knew how to feed him. He had some problems with his lungs so he had to stay in an oxygen tent for a few days. Brayden has an awesome cleft team that he sees at U.C Davis. And is also seen by many awesome Doctors ranging from our home town of Oroville clear to Redding. As he was being treated for his cleft, the Doctors and I started noticing some things that weren’t quite right. So throughout his treatment he has also been diagnosed with severe asthma, some learning disabilities, developmental delays, some physical disabilities, amblyopia, sleep apnea, and speech disabilities. He continues with speech therapy, and was involved in occupational therapy for many years, as well as physical therapy.Brayden is such a little trooper. He is always worried about everyone else. He has the kindest heart I have ever seen for a 9 year old… kinder and more forgiving than any adult I know, so very loving. In spite of how much he has been through, and still has to go through (next major surgery, bone graft, expected Dec.09-Jan10) he still will go out of his way to bring a smile to everyone around him, no matter how they have treated him in the past. He has his onry side too, and there are days he doesn’t get along with his siblings quite as well as others. He has made me a better and stronger person! I wish I could do as well as Brayden at maintaining a positive attitude no matter what has happened or what is coming up! I am so proud of him he amazes me, and I thought it would be nice to give him some recognition for all he goes through and has been through, as well as his siblings, for always, well, most of the time- they are siblings ya know! supporting, loving, and sticking up for each other!

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Elyse was diagnosed at 22 weeks gestation with Tricuspid Atresia. She is the proud survivor of two open heart surgeries, the first of which occured at 12 days old. She is all smiles and sunshine and we are so lucky to have her and have each precious moment with her!!
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Aiden is our hero! He was born on August 8, 2009. When he was two months old he was admitted to MUSC Children’s Hospital for feeding and swallowing problems. After a week of testing he was diagnosed with a laryngeal cleft and laryngomalacia. A laryngeal cleft is a rare abnormality of the separation between the larynx and the esophagus. This separation causes food and liquid to pass through the larynx into the lungs. Aiden had the laryngeal cleft repaired March 2009, but continues to aspirate on thin liquids. He receives swallow and feeding therapy to strengthen his swallow. He currently has to have all liquids thickened for him to be able to swallow liquids safely. Aiden is our hero because he is resilient through all of the medical challenges he has had to face. We are so thankful to have him in our lives! He is a fun and sweet little boy!!!

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Ali was welcomed into the world on February 8, 2010 at 12:48 pm weighing 6 lbs. 8 oz. and 20 inches long. She was an answer to our prayers, however, we soon realized that Ali had more problems than we realized. She spent all day every day screaming. We spent the first four and a half months of Ali’s life trying to figure out what was wrong with her, taking her to numerous Doctors and having several tests done without finding much out. On June 30, 2010, we took Ali to Parkview Hospital in Fort Wayne to have her MRI on her brain. She was such a big girl, she did so good. However, they found that she has agenesis of the corpus callosum. So, the two hemispheres of her brain don’t “talk” to each other. This will cause developmental delays for her for the rest of her life. On December 22, 2010, we learned that Ali has a medium sized hole in her heart. She now sees a Pediatric Cardiologist to moniter the hole and in August of 2011, they will decide what course of action they will take for the hole. Whether it will be a cath procedure or open heart surgery to correct it. We are in the process of going through genetic testing since she has the hole in her heart and the agenesis of the corpus callosum. We are waiting for the results. On top of all of Ali’s medical problems she was diagnosed in December of 2010 with sensory processing disorder- hypersensitive. At 13 months old, she is now starting to eat stage 3 baby food. We have had an incredible journey with Ali, she will always be my hero. I can’t begin to imagine what that little girl has had to endure and what she will have to endure for the rest of her life.
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Meet Airomise! This amazing hero has a del/dup/inv of his 8th chromosome. We found out piece by piece what was going on. 1st is was his heart condition that would need surgery, then it was his low muscle tone, askew feet, crossed eyes, white matter defect…. the doctors eventually put it all together and sent out for a genetics test. We got the answer shortly before he turned a year old. But that is just the medical jargon. He himself is an amazingly brave caring little boy who lit up our lives from the minute we knew about him. He truly is a blessing. I love waking up to his smile in the morning and his hugs throughout the day. I love how he makes us stop and smell the roses so to speak. We don’t take as many things for granted anymore. Things most parents look over we celebrate with a passion! Infact….. He really did open my eyes to photography. I love capturing every step he takes so to speak! He even cheese’s for the camera now. He truly does melt my heart.

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Before Bennett was born we knew he would have Down syndrome. We learned of his diagnosis through an amniocentesis at 18 weeks. We also learned he had a heart defect that had to be repaired. The first few months of his life were hard, trying to get him to gain as much weight as possible before his surgery as well as adjusting to having a child with special needs. At 11 weeks old Bennett had open heart surgery to repair the AV canal defect in his heart and did wonderfully.Now at 2 years old, he has a strong heart and is an absolute joy! Thinking back, the unknowns were so scary before he came into the world. We had no idea what our lives would be like having a child with Down syndrome. Thinking about not having the “perfect” child was overwhelming but once he arrived we realized he was made perfectly, just for us. He is a wonderful addition to our family and his sisters adore him! Bennett easily brings smiles to faces that he comes in contact with and he isn’t satisfied until he receives a proper wave or “hi” in return! Having a child with Down syndrome definitely has it’s challenges but the pure joy Bennett brings us, outweighs any struggles we go through. We are truly blessed to have Bennett in our lives and wouldn’t change one thing about him!

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On July 12, 2008 our beautiful daughter Sophia Marie was born. She was diagnosed shortly after birth with Down syndrome. Sophia spent 12 days in the NICU with a collapsed lung and low heart rate. She was on oxygen for 3 months and a heart monitor for 6 months. She came down with pneumonia and being the strong willed child that she is, she fought it off like a trooper. Sophia continues to amaze us every day. She is a very bright, energetic child. Her big blue eyes and smile say it all. Words cannot express the love and joy that Sophia has brought to our family. Her two older sisters adore her to pieces! We have been blessed beyond measure.
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Meet amazing Kenton! On July 7th, 2009 a tumor was found on Kenton’s brain. Kenton then underwent a 4 hour surgery to remove the tumor. Afterwards the neurologist came to speak to us, and told us that the tumor was malignant. He was pretty certain that he had removed it all and that Kenton had a common childhood cancer called Medullablastoma. Because of the location, he lost his sense of balance and coordination, and doctor’s said he would have to relearn how to sit up and walk again. Several MRI’s were done and no new tumors were found, until December 2010. Kenton again had a tumor on his brain. It was operated on and the doctors are confident they got it all. Because of the surgery Kenton is now paralyzed on the right side of his face.
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Elijah is one year old and he was born with Cystic Fibrosis, a life threatening genetic illness that requires him to have hours of treatments and many medications daily. He has had two hospitalizations in his first year but is currently fighting through and staying “healthy”. Despite the things he goes through, he is a sweet, happy, and active little boy. He brings joy to all those around him and enjoys his every moment. We pray for him to have a cure to take this horrible disease away from him, and will fight until we see that cure!
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Meet Sawyer! Sawyer was born with kidney failure due to a diagnosis of Prune Belly Syndrome. He spent the first 3 months of his life in the NICU and is currently on peritoneal dialysis while he grows big enough for a transplant. With everything he goes through, he still is able to smile and is always ready to laugh! He is a true miracle.
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Ryan was born December 22, 1998. He was a full term baby. There were no problems during the pregnancy. I was given a positive test for Down syndrome but with further testing it was not the case. He weighed 8lbs 9 oz. via C-Section. Ryan lived his first 8 months of life as normal as any new baby. He was reaching all his milestones, sitting up rolling, laughing. He was eating well, cutting teeth. Between August 1999 and January of 2000, Ryan had 5 more seizure all due to fever. At the end of January of 2000 Ryan had a seizure without a fever. He was then put on his first Anti Epileptic medicine, Phenobarbitol. This began a long road of hospital stays, emergency room visits, and a long list of failed medicines, which include Phenobarbitol, Tegretol, Topomax, Keppra, Depakote, Zonegran, lamictol, Dilantin, Felbatol, and thousands of seizures. n August of 2007, Ryan was tested for the gene mutation that causes Dravet’s. It came back positive as a Mis-sense Mutation. We are still awaiting the explanation of the this result. Since Ryan’s diagnoses, he has also been diagnosed with neurological disorders, Autism spectrum, Obsessive Compulsive Disorder, Sensory Integrative Disorder, which we have seeked therapy for, along with Speech Therapy and Occupational Therapy. He is also participating in Neurofeedback Therapy, which we have seen a great improvement in his speech. Ryan was also granted a wish from the Make-A-Wish foundation in October of 2008 because of this life threatening illness. He was given a week in Orlando, Florida to visit the Magic Kingdom and meet Mickey Mouse. We also visited Sea World and Universal Studios. Ryan is a such a blessing and wonderful joy to have in our lives. He has taught me about how life is what you make it. Not to fret over the little things. He has taught me that life is precious and everyday is special. The most important one he has taught me is patience. Being the mother of a special needs child ! has brought me joy and it has brought me sorrow, but I wouldn’t change it for the world. I had so many hopes and Dreams for Ryan before his diagnosis. I still have hopes and dreams for him, they are just a little different now.
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Parker is the greatest gift to our family! He is sibling number four to proud big brother, Taylor, and two big sisters, Mallory and Madeline. He is full of joy and lights up any room. He has an infectious laugh and loves being the center of attention. Despite being diagnosed with Down syndrome after birth and then finding out he had to have open heart surgery he continues to thrive and inspire us daily. He reminds us that God has a unique plan for all of us and finding Parker’s purpose is part of this blessing in life!
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Rory was a baby born of a struggle…the struggle was his father and I’s. We were told we would never have children and after several rounds of IVF welcomed our first child to the world. I held him and all I could say over and over was “I love you, I love you, I love you.” Shortly after his birth doctors came in and shared with us ‘concerns’ that our son had Down syndrome–a diagnosis confirmed through blood-work. Rory is a little boy who since he was two weeks old had more specialists than I knew existed and therapy 3 days each week. The things that a typical child do naturally, well Rory needed and continues to need supports to do those things. It would take him 3 hours to take a bottle. In between therapy he spent time at his cardiologist, endocrinologist, ENT, Opthamaologist. It became so much that we moved to North Carolina to be closer to my parents. While in North Carolina Rory suffered a prolonged period of vomiting. He lost almost 6 lbs and fell 50% on the growth chart. A series of tests were run to determine the cause, and he was hospitalized for a week at Christmas 2009. The tests yielded difficulty with motility due to low tone but also revealed Rory had a low white blood count and was neutropenic. He was therefore sent to a hematologist/oncologist to monitor his blood levels every two weeks. Due to the poor health insurance and medical expenses my husband and I were required to return to Connecticut, where we are presently living. Rory is doing beautifully. He now has therapy 8 times each week and frequent appointments with his team of specialists…but we are blessed. He is the joy of our lives. He is so full of joy and has since been discharged from his hem doc!!!
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Jack is a super easy going, 14 month old. At 20 weeks gestation, we not only found out we were having a boy but that he had hydrocephalus. Since his birth on April 23, 2009, he has had multiple MRIs, ultrasounds and cat scans. He is such a trooper at each doctor’s visit and through each test. So far we’ve been very fortunate that Jack has not required a shunt to drain his brain fluid. Unfortunately, this is still a possibility for the future. He turned one this past April. Family came from all over the country to celebrate his special day. Jack has a laid back personality and is such a joy to be around. He works hard each week with his physical therapist and is catching up on his developmental delays. He even just began walking! If nothing else, he is our hero!
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Nora started having seizures 20 minutes after her birth, and she suffered hundreds a day. Medications had little effect on controlling her seizures, and Nora’s appetite began to decrease as well. At 4 months old Nora had a g-tube surgically inserted, for eating. At 5 months old, Nora underwent the first half of surgery known as a hemispherectomy, where surgeons remove an entire hemisphere of a brain, in our case to control her seizures. At age 14 months old the surgery was completed, and Nora has been seizure free since. Nora is working rigorously on developing strength and balance to walk, and she is motivated & determined. Nora is a happy, loving, and friendly two and a half year old. She is the biggest hero I will ever know!
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Brelyn was born May 8, 2009 at 25 weeks weighing 2 lbs 3oz, 14 1/2 in. She had a long, rough road ahead of her. The day after she was born the doctor told us that Brelyn had Grade IV IVH (intraventricular hemorrhage). The hemorrhage caused her to develop hydrocephalus (“water on the brain”). She needed to have surgery but could not until she weighed at least 4lbs 4oz. So as an alternate the doctor did ventricular taps to help drain the fluid off of the brain to prevent any further damage. After a month she finally weighed enough to have the surgery! Everything went well and Brelyn has a VP Shunt to keep the CS fluid draining properly. She was able to come home August 5. Two weeks later she was readmitted to the hospital because after an eye appointment she quit breathing. She stayed in the hospital for a week and was able to come home but she was now on oxygen. Three months later she had to have a shunt revision because the shunt had quit working. She is going on 6 months with the revised shunt. We pray there will be no more revisions needed. The damage to her brain also caused her to have permanent damage to her optic nerve. She now wears glasses. One doctor we see seems to think Brelyn may have a mild case of spastic triplegia. Brelyn receives physical therapy 2x a week. Even with everything Brelyn has going on the doctors are amazed as to how well she is doing. She is our MIRACLE baby!
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My name is Kyle Stolarz and I am 9 years old. When I was born I had a brain injury that caused me to have a stroke, bleeding in my brain, apena and seizures (epilepsy). To this day I am still battling seizures but they have gotten much better. The stroke also caused me to have Mild Cerebral Palsy. Even though I have had a rough rode and I am one of the happiest laid back loving boys you will know! I love everyone I meet and you are sure to receive one of my super awesome hugs! I have one brother Liam who I love very much! I enjoy playing baseball, watching golf on TV and bowling. I also enjoy hagning out with my doggie Shane.
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At 22 weeks gestation, Mason was diagnosed with a severe right-sided congenital diaphragmatic hernia. The prognosis was grim, but we were determined not to give up hope. Prior to birth, Mason underwent 2 fetal surgeries in hopes it might inprove his outcome after he was born. Mason was born on 5/25/07, just short of 34 weeks. He was immediately placed ECMO (a life saving heart and lung bypass machine). 18 days later, Mason’s heart and lungs were able to function on their own and he remained in the NICU for an additional 2 and 1/2 months until he could come off of the ventilator and breathe completely on his own. Today Mason is an active and healthy 3 year old with only some minor complications from his condition. He has proved to be a fighter, beating the odds multiple times.! He is our world and has taught us so much about how precious life can be!
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Tristyn was born on July 28, 2009, 3 weeks early via emergency c-section. He weighed 8 lbs 5 ozs! Before his introduction to the world, we knew about 2 heart defects, his CoA and VSD. Because we knew early, we saw a Pediatric Cardiologist as well as a Fetal Maternal Specialist regularly on top of Mommy’s OBGYN. Tristyn was delivered in the NICU OR with a flight team in the room. The team was not needed! He spent 6 days being monitored in the NICU, and then we were released and told to follow up with his Ped. Cardiologist in 3 days. 3 days later we went to the Ped. Cardiologist and were sent directly to the hospital where he received his 1st open heart surgery at 20 days old. It was during this visit that we learned Tristyn not only had the CoA and VSD, but he also had an ASD, Sm. Mitral Valve, Bicuspid Aortic Valve, Sm. Left ventricle, and bi-directional blood flow. His condition is a very rare for of Hypoplastic Left Heart Syndrome, called Shone’s Complex. Since that diagnosis, he has also developed Aortic, Sub-Aortic, and Mitral Stenosis. Tristyn sees his Cardiologist every 6 weeks and will need another OHS to replace the valves in the left side of his heart, but we are hoping to wait until he is around 6 or 7 years old before this happens. He is very small for his age, weighing only 12 lbs 12 ozs and has very delayed fine and gross motor skills for which he receives therapy once a week. For now, we monitor his heart every 6 weeks (or sooner if we think something is “off”), we pray, and we enjoy our miracle man!
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This is my amazing little boy Logan Stone he was born 3/30/10 8lbs 14oz we found out on day 3 that he had a hole in his heart then we found out at 3 weeks it was a very large hole and he has TOF that was one of the worst days of my life i will never forget it! it was a long painful heartbreaking journey to his surgery he was in the hospital the entire month of July just trying to get him stable for surgery do to malnourishment from him not being able to take in enough calories, he came home with a feeding tube in his nose and a picc line in his heal the end of July and from there he had to have 2 shots a week to increase his hemoglobin it was horrible for everyone after 3 canceled surgeries FINALLY he had his surgery sep 22nd 2010 i never thought it would happen!it took about 4-5 hours (less time then it took putting in his picc) he did AMAZING he was the smallest baby ever to have that surgery without a blood transfusion at that hospital he had a huge team of doctors and professionals working to get him safely to and through his surgeries from all over the world they even re configured the bypass machine for him, he flew through surgery without a single problem and was off all his meds/oxygen and back to his feisty self kicking his legs like crazy tearing off monitors and yelling at nurses within 24 hours. the doctors were amazed at his progress.they were going to send him home on day 2 because he was doing so well but he was still having issues with feeding but he was so stressed out at the hospital we convinced his cardiologist ( a wonderful doctor) to let us take him home i think it was day 5 and try feeding him for a couple days before they put that tube back in his nose. as soon as he was home he was eating like a champ! he was 14lbs and 6 months old when he came home from surgery now he is 10 months and 20lbs 14oz! and he LOVES eating anything i will let him get his hands on. his cardiologist says he doesn’t think he will need any further surgeries! he is a amazing little boy and i thank God everyday that i still have him because there was a point when we were told he wasn’t going to make it! he loves to bug his big sister and pull her hair!and is learning to pull up on furniture and trying very hard to crawl he is almost 11 months so he is slightly behind and will be starting therapy in march to help him catch up. He amazes me everyday and has touched so many people through his journey
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Nolan was born a healthy little boy and was developing right on track. At 4 months of age Nolan was at daycare when he rolled over onto his tummy for the first time and suffocated. Nolan was without oxygen for over 20 mintues and when we arrived at the hospital they didn’t believe Nolan had much of a chance. Nolan was in the PICU for 9 days and then a regular room for another 12 days. The doctors told us that Nolan would never walk, talk, see or live a “normal” life. Nolan currently receives physical, occupational, visual, and hearing therapies. He can not take anything orally so everything goes through his G-Tube due to chronic aspiration. He takes multiple medications to help with everything from seizures, clonus, respiratory, and spastic muscles. He is ar! e “little man” that continues to fight each day.
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My name is Graydon and I’m a hero! I was born missing a piece of my 18th chromosome. Because of this I have spent a lot of time in the hospital. Before my first birthday I had 2 major surgeries, one to give me a feeding tube so I could eat without getting pneumonia. I am a very happy boy. I love playing with my dog, Duncan, going for walks with Mommy and Daddy and listening to music. My favorite thing to do is jump in my jumperoo. I just learned how to sit up and I am very proud of myself. My syndrome has held me back quite a bit but I’m a tough guy who takes it all in stride.
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My name is Madison! I am 8 years old. I have Cerebral Palsy which makes it very hard for me to move my arms and legs. I love to bounce on my Daddy’s lap, and cuddle with my Mommy. I love everything that glitters or sparkles. My favorite thing in the world is to ride my pony at the SMILE program during the summer! I have a Baclofen pump in my tummy which helps my muscles to feel better. I have a vegal nurve stimulator in my upper left chest by my heart that helps some of my seizures go away. I am fed with a gastrostomy tube because it is very difficult for me to chew and swallow. I am going to go to the big castle hospital soon to have my left hip fixed, Mommy and Daddy tell me that my femoral head is not where it is supposed to be and that a nice doctor is going to put it back. I am not worried about the surgery, though; because, I am very brave!
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Meet Graysen! We found out that Graysen had a CHD during the 8th month of pregnancy. Therefore, plans were in place for Graysen to be born near CCHMC. Graysen had his first open heart surgery at 6 days old. Recovered fairy well from surgery, however has had other complications since then that has kept him in the hospital since birth. He had 3 major operations by 7 weeks old, including the OHS, a nissen fudoplication with g-tube placement, and a tracheostomy. For all the complications Graysen is still managing to grow and get stronger with each month. We had hoped to go home briefly before the next OHS but unfortuanely that isn’t going to happen. We are anticipating the next surgery within a week. But with this next step we are hoping and praying that we will be able to take him home soon and allow him to keep growing and thriving with the love of his parents and big sister!
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Madison was a fun-loving, healthy 4 year old in May of 2008 when a distended, hard belly made her go to the local ER. After several tests, we were told she had tumors and were taken by squad to Akron Children’s Hospital. A biopsy showed that she had Burkitt’s Lymphoma (a type of Non-Hodgkins Lymphoma) and that it was a very fast, agressive cancer. She was already stage IV when diagnosed. Madison endured numerous surgeries and procedures, 9 rounds of inpatient chemo, and countless pokes and prods. Through it all, Madison kept her spirit up, made everyone smile and laugh through their tears, and made many friends with forever bonds. This horrible disease has made her a stronger, more caring child and she is currently in remission. She is a cheerleader, has been in the high school play, and loves going to many events with her fellow childhood cancer friends. Madison didn’t let cancer get her down and she has become an amazing young lady with a great, compassionate spirit!
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Robbie is our beautiful blonde 6 year old ray of sunshine. He is on the Autism Spectrum with Persuasive Developmental Disorder- Not Other Wise Specified (very similar to Aspergers). He has social skills problems, anxiety, fine motor delays and difficulty following directions. In spite of this he is passionate about life and is a real practical joker. He has an infectious laugh, tells jokes and loves to teach people about his favourite book Series; Mr. Men. Jasmine joined our family through the miracle of adoption this past may. Jasmine was born was some neurological abnormalities that have caused her some delays, at 2 she is just learning to walk and only speaks about 4 words. it is suspected that she has Cerebral Palsy or Valproic Syndrome. Jasmine is a happy little girls always smiling and giggling and trying to keep up with her new big brother. She says a lot with her eyes, which convey everything from joy, to mischief, to protest. We are very lucky that this little princess has joined our family.
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I was in the room when Abigail’s birth mother brought her into the world. As soon as she came out they coded her and pulled my husband in the room. We both stood there and watched the child we waited on for so long wondering if she would live. Although she did spend a little time on oxygen and an antibiotic, when we went home we had a wonderful healthy little girl. At eight months old we were sitting in a doctors office when a genetics students started counting her “birth marks.” It turned out that the cafe au lait spots that we kept noticing showin up indicated a genetic disorder called neurofibromatosis 1 (NF1). The disorder causes benign tumors to grow on nerves anywhere throughout the body. It can also cause a large myriad of other issues and is considered progressive. Abigail has low muscle tone, macrocephaly, developmental delays, and issues with gaining height and weight. She also has asthma. However, she is the happiest and easiest toddler we have ever met. She loves to be the center of attention and to dance. Her smile makes everyone else around her smile. She is a beautiful, wonderful, blessing. Although the future is unknown her life has affected us more than we can describe.
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Joseph was born 02/09/08 a month earlier than expected. He appeared fine at birth and he could not have been a more perfect addition to our family of 3! Around 1-2 weeks of age it was apparant he had something very wrong with his liver. After weeks of testing and hospitalizations it was confirmed Joe had Biliary atresia-a rare liver disease. basically he was born without an exit to his liver. At 7 weeks of age doctors performed a nearly 6 hour life saving surgery called the kasai. This surgery is done to try and prolong the life of Joe’s liver. This disease has no cure and it progressive. Luckily we have the option of liver transplantation. Most children(over 80%) with this disease are transplanted in very early childhood. Joe had a rough two years where he was admitted to! the hospital multiple times for complications related to his liver disease. He has recovered each time so far and has remained without a transplant so far. Joe is your typical two year old who loves playing with his four year old brother Jackson, going down the slide at the park, squishing his toes in the mud, and being rocked at night before bed by mommy. He has a long road ahead of him but he is such a tough and sweet little boy with a lot of support behind him! Today he is thriving and we really have learned to treasure those days because tomorrow may be a different story. We are so thankful for Joe and all he brings to our lives. He is our littlest hero!
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Ethan has a rare congenital heart defect called Double Inlet Left Ventricle with many other complications. He had his first open heart surgery at 4 days old, this was an 8 hour surgery. He had angioplasty at 2 months old and another open heart at 3 months old. He is a strong little boy and a brave warrior. He continues to see his cardiologist and to defy the odds of being a healthy, active child. His next open heart surgery is still in the future, Ethan’s heart will tell us when his next surgery will be. For now, Ethan’s next procedure, a heart catheterization, has been postponed since Ethan’s heart function is better today than it was 6 months ago, a true miracle. Ethan’s two older brothers, Aidan and Reilly, love and help Ethan all of the time, they are part of the reason Ethan is thriving. Ethan is my littlest hero!
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Meet our hero! Brandon was born at 31 weeks gestation with a rare birth defect known as Esophogeal Atresia/Treachoespogeal Fistual as well as other defects which formed as a result of the EA/TEF. Every day our prayer was “God if you give me just 5 minutes to see my son, hold him and tell him I love him, just 5 minutes today, we will be okay”. We never asked why us but why NOT us and what can we do not only to help our little one but to help others with this defect as well. While the older Brandon gets the better he gets, his defect will always be a part of his life in some way, shape or form. We always have to worry about strictures in his esphogus and the potential for esphogeal cancer developing.
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When Aden was born in April 2003 we were expecting a typical healthy baby. During delivery the doctor became concerned because they were having trouble finding Aden’s heartbeat. When he came the nurses noted that he had low tone and his eyes were “a little slanty”. At 2 weeks old the blood test came back. Aden had Down syndrome. He Was unable to latch, but we fed him with a syringe until he was strong enough to take a bottle. At 8 months Aden had his 1st surgery to place tubes in his ears. More surgery followed, but things seemed “normal” until Aden was about 3 years old and started loosing his speech. Aden is now 7, has been diagnosed with ADHD asthma and sleep apnea and we are still looking for answers. Through it all Aden has been a light in our lives. He laughs easily, loves completely, and his smile brings joy to friends and strangers alike. We are thankful to have him in our lives every day.
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Sarah Beth is our little hero. This is her story! She was born with complex heart disease. She has a total of eight heart defects. Although she has a whole heart, only her left side works. Immediatly after birth she was sent to the NICU and then taken to Children’s Healthcare the following morning. At 4 days old, she had her first heart surgery. It was a very difficult time and she was in and out of the hospital for a month. She had a lot of digestive issues including an allergy to breastmilk and was on a NG feeding tube. When we brought her home she was at very high risk for Sudden Cardiac Death, so we were unable to have any visitors or get her out at all. On December 15th, she had her first true! open heart surgery, called the Glenn procedure. She was on heart-lung bypass and had a pretty extensive surgery. She will be having another open heart surgery around the age of two. She is doing incredibly well and is our little miracle baby! The only precautions we really have now are that she cannot be out in the heat for long periods of time and we still limit her outings and try to keep clean hands and away from anyone who is sick because it is harder for her to recover from illness. She is currently off of her feeding tube and is eating well! She only has speech and physical therapy once a month because she keeps meeting her goals. She also just started wearing glasses (too cute!!!) She is a happy little girl with a great personality.
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Eva was born on November 10, 2008 after an uneventful pregnancy. It wasn’t until she started turning blue only a couple of hours after birth that we suspected anything was wrong. Less than 24 hours later, she was diagnosed with Hypoplastic Right Heart Syndrome, a rare congenital heart defect. She has had two open heart surgeries, her first one at only four days old. She is scheduled to have one more in a couple of years, followed by a transplant when she’s an adult. Eva the Diva is a happy, headstrong, mischievous little girl. She loves music, Sesame Street, and her big sister, Emily. Her strength is truly an inspiration to everyone around her!
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June 6, 2002 Lucas was born shortly before midnight on his actual due date. His biological mom had just given birth and I heard them say there are complications. The room started spinning. We weren’t going to have more children due to the fact I have a form of Muscular Dystrophy. We didn’t want to pass the defective gene onto our children. So when they told us he had signs of Down syndrome we were shocked! He was also born with cateracts which at the time was our first concern. He had them removed at 3 weeks of age and started wearing contacts…yes I said contacts!! Last spring, U of M Hospital did put permanent lenses in both eyes yet he is still visually impaired. The only thing the lenses did was save us the expense of the contacts as well as the hassel of putting them in and out of his eyes. He also wears glasses to help with his school work. He will be starting 2nd grade in the fall. And to think he is the one that has opened our eyes to what a special needs child can do!
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Our little man, Brandon, was born to a normal pregnancy weighing 8lbs. 10oz. He met early milestones on time, but around 7 months when he wasn’t able to sit up without support, we got concerned. Our pediatrician assured us that he was just taking his time because his older brother was “doing everything for him.” By 9 months old, we were not willing to wait any longer. An MRI was performed and we met with a neurologist. The results came back as an “abnormal brain.” After further consultation with a brain malformation specialist from the University of Chicago, Brandon was diagnosed with a non-classic form of polymicrogyria, meaning that the folds in his brain are small, but Brandon does not exhibit all the characteristics of the disorder. More genetic testing is being done. This is a recessive disorder that my husband and I both carry. Clinically, Brandon presents as a child with cerebral palsy. He has spasticity and tone issues with his muscles. He is the happiest little man on the face of this earth, and a blessing to the entire family! We are so thankful to have him in our lives.
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Meet JJ! JJ is an 11yo boy with 49xxxxy syndrome; he has 3 extra female chromosomes. He has suffered severe asthma and allergies since birth, which required a tracheostomy and ventilator of which he is now independent of. His lungs have been through quite a bit in his 11 years, so he still requires constant medication to ease his breathing.
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Eliana is a spunky, fun and full of life little girl! When she was born there was something wrong with her heart. For five months we went back and forth to the doctors (cardiologist, pulmonologist, and pediatrician) to try and find what was wrong with our baby. The pulmonologist saw her and said, “Her lungs look cloudy on x-ray, but she should grow out of it. Bring her back in 3 months” I knew we didn’t have 3 months. Finally our cardiologist said that she thought she might know what she had, but she didn’t feel comfortable enough to treat it. She said we should consider going to Denver Children’s Hospital to get her looked at. I said “Send us NOW!” All I knew was that they thought she had this disease called Pulmonary Hypertension. I didn’t know what it meant, but I knew we could either leave Denver with oral medication or an IV that they called a broviac in her chest that would be connected to a pump. I definitely didn’t want that for my baby, so we prayed for the best. We learned that this new line would be her life line and we had only 3-5 minutes to get her a new line if this one came out accidentally. Her pump could never be stopped or it would be fatal. I remember sitting in a conference room at the hospital with Jake, my mom, dad and little Eliyah (our oldest, she was only 3 at the time) as a nurse taught us how to mix her medication. There were syringes, needles, masks, gloves, pumps, medication, saline and a book full of instructions! As we learned more about this disease from the internet, we felt so alone and so afraid, and we knew we had to kick our faith into full gear! Since then we have held on to God with all that we have and we have not let go!
Almost 7 years later we are still doing all the things we did in the beginning for Eliana’s care each and every day, and our arms are a little tired from holding on so tightly to God, but everyday He give us strength to go on and we do just that.

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2010 Team of Heroes

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After 11 years of trying to start a family it would indeed be a miracle if we were. At 33 weeks I was admitted to the hospital because my blood pressure was so high. We soon discovered that I had pre-eclampsia. I remained in the hospital until Paula was delivered via emergency c-section on November 17, 2009. We knew that this baby would truly be a miracle but until she was born we didn’t know she would also be a hero. Paula weighed 5 lbs 8 oz and was 18 ½ inches long when she was born. Because she was a preemie and due to my being insulin dependent they immediately whisked her away to the NICU. While I was in recovery my husband went to see our little miracle. The staff told him that she was having trouble regulating her blood sugar and as soon as it was stable she could come to our room. Later that night when he went back to see her, the Nurse Practitioner pulled him aside and told him that they discovered that Paula had a heart murmur. He was assured it was nothing to worry about but little did we know we would be doing a great deal of worrying. They scheduled an ECHO just as a precaution and again we were told that her heart murmur was nothing to worry about. We were handed a slip of paper and told that they had made us an appointment with a Pediatric Cardiologist in two weeks. On February 24th we handed our baby girl over to the surgical staff at Golisano Children’s Hospital in Rochester, NY. That was the hardest and worst thing either of us has ever had to do. After 5 long hours her surgeon, Dr. Alfieris, told us that he had done a complete repair of Paula’s heart defects. She stayed in the hospital for 9 days and amazed everyone with how well she did every step of the recovery process. Although her pulmonary valve is still narrow and it has a small leak we are extremely hopeful that Paula will not need another surgery. Since her surgery Paula has met and exceeded every single milestone and goal set by her Doctors. She is standing by herself now and even walking around the perimeter of large objects while holding on to them.
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Addie Grace was adopted from China when she was 20 months old. At that time, she had already overcome living in an orphanage her whole life and also having heart surgery to correct a CHD when she was 8 months old. It pains me to think that she had to go through heart surgery alone without a mom or dad to hold her and tell her that they loved her. She had a moderate sized hole in her heart that has been fixed completely. She also was diagnosed with strabismus but that was cleared up by the time we adopted her. She is old enough to understand now that she has a large scar because the doctors had to fix her heart. She truly has the heart of a hero!
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Jaxon was born with several severe heart defects. We were told he would need a three stage open heart surgery in order to survive. He had his first open heart when he was 11 days old and the next when he was 6 months old. We are now getting very close to having his 3rd open heart. In the past year Jaxon has had two ear tube placements, a bronchoscopy, dental surgery and has recently endured a bilateral stroke. Jaxon has to take a lot of medicine and two injections a day. He has physical therapy, occupational therapy and speech therapy not to mention all the Dr.’s he see’s and the tests and bloodwork’s he does routinely. Throughout it all he smiles. He brightens my day everyday. Jaxon has two sisters who also love him very much and have given up a lot for us to be able to care for jaxon. This paragraph cant even sum up all the heartbreaking things hes endured and all the scenarios we have had to imagine. He is very brave and the the strongest little boy I know.
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On April 27, just after her third birthday, our daughter, Avery, was diagnosed with type 1 (juvenile) diabetes. She will be insulin dependent for the rest of her life. She is required to constantly check her blood sugar by pricking her tiny fingers 10 or more times a day – even twice in the middle of the night. Everything she consumes must be measured and weighed and she must stick to a tightly controlled eating schedule. She continually battles both high and low blood sugar which can prove deadly. While on injection therapy, she got 5 or more shots of insulin per day. She now wears an insulin pump that is attached to her body 24 hours a day. We must insert a small catheter under her skin every 2-3 days. This is where insulin is continually infused into her body. But this insulin that she takes is not a cure; it is merely life support. Avery is a trooper and endures it all bravely. The injections and insertions continue to be heart wrenching, as she cries and fights with each one. However, Avery is still full of smiles, laughs, and 4 year old spunk, amidst her daily diabetes routine. Avery continually amazes us and is a blessing to have in our lives as a daily reminder of spirit, humility, and a positive attitude.
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On Friday January 18th, 2008, Benjamin Benaud Watters, “Benny”, was diagnosed with a brain stem tumor (Diffuse Intrinsic Pontine Glioma – DIPG). It all began back in early November 2007 when his left eye started to cross. It was thought he had Strabismus, glasses and patching were prescribed. The eye failed to improve, and so he had an MRI on January 18th, 2008. We were completely shocked when the tumor was discovered. Benny participated in a Phase II Clinical Trial sponsored by the Children’s Oncology Group (COG) and carried out at Children’s Memorial Hospital in Chicago, USA. Benny completed 6 weeks of radiation combined with an anti-cancer medicine called Motexafin-Gadolinium (used as a radiosensitizer) on March 11th, 2008. His first MRI post treatment on April 24th 2008 showed a 44% reduction in the tumor. The following 4 MRI’s up until January 22nd, 2009 showed the tumor as stable. Benny’s most recent MRI on March 23rd, 2009 showed a slight increase in the tumor. Since then Benny’s tumor has progressed and he is now at home spending time with his family! Benny is a happy, active, sports loving 5 year old, adored by his big sisters Lily and Isabella and parents Lisa and Brendan. He loves The Wiggles, Dora and Bunnytown, fancies himself as a rock star on his pink guitar, is a superstar on the computer and a master of Nintendo Wii.
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My Name is Jacob Jason Moore. I am 11yrs old. Born May 25th 1999. My mother gave birth to me 2 months premature. I was born with a club foot, cleft palate, and a rare chromosome syndrome which occurs only 1 in 85,000 births. It is called 49xxxxy syndrome. A variants of Klienfelters Syndrome. My Favorite things to do are: Play my guitar as often as possible! I love to take walks with anyone who will walk with me! I Love being outside and love to swim! I am a hero because I live life in a very different way than most could comprehend! Normal things that people take for granted causes me to suffer from severe anxiety. Like leaving or coming to and from a place. Certain clothes bother me. I suffer from arthitis pain, I can not talk like my sisters do, but I understand what they are saying and I get frustrated that I can’t tell people what I want sometimes! People judge me because I am different, but underneath it all I am a very happy boy and just love meeting knew people. Things take me longer to learn, but I will get there in my own time and own pace! I am strong and a fighter for this I am a Hero! One thing I would tell you about this syndrome is that you may have it harder than most, but believe in yourself and take your own time, and you will be able to do what you want! It is all about what you set your mind too, and you honestly believe that you can do it! Remember you are who you are for a reason! Be proud of who you are!!!!!!!!!!!!!!!
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Chloe Christina was born May 9, 2006 – a perfect, beautiful little angel from God. She was an easy baby and a very happy baby. Her big brother, Eli, was so excited to have a little sister to love. Although Chloe was so perfect and beautiful, she had her struggles to overcome – Congenital Muscular Torticollis (also known as “twisted neck”) caused her to tilt her head to the right most of the time. And because of the CMT, she developed something called Plagiocephaly (“flattened head syndrome”). She wore a corrective helmet for 23 hours a day for 5 months, which helped with the plagio. But after several months of physical therapy, her head tilt was still so bad she could hardly move her neck and it was causing developmental delays. Chloe had endoscopic surgery to release the tight muscle in her neck in December 2007. The surgery went well, and Chloe seemed to be doing great for the next couple of years. But in April 2010, out of nowhere, Chloe started having seizures. A few days later she was diagnosed with Tuberous Sclerosis, a rare genetic disorder that can cause tumors in the brain, heart, kidneys, lungs, skin and eyes. Chloe is just as sweet, happy, funny and vivacious as she always has been. She will always be our beautiful little princess no matter what. She fills our lives with joy every day, and we pray she will live a long, healthy life despite the obstacles she faces. Even though the doctors say her disease is incurable, we will continue to ask the Lord to heal her, and we will continue to pray for a cure for this disease for all those in the world who suffer from it.
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Amelia was diagnosed prenatally with T21 and Tetralogy of Fallot. Since her birth we have been told to expect many terrifying things, but are excited to say she is thriving. She will be receiving Open Heart Surgery in August when she is only 4 months old. No parent can even prepare themselves for something as scary as a sick child, but we believe God has blessed us with the gift of our beautiful daughter. We received our first smile from Amelia at 5 weeks. That smile melted away all of our fears.
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Cooper is a 5.5 month old baby boy. He never gained weigiht properly and at birth was hospital along with hospitalized at 5 months old. He was found to have failure to thrive at only weighing in at 11 lbs at 5.5 months old and tests lead doctors towards a metabolic and muscle disease along with cystic fibrosis suspicion. He is very strong and continues to amaze everyone he meets! His challenges do not keep the smile away from his face!
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Jack was born on June 22, 2009. 5 days after he was born he was diagnosed with Trisomy 21, or Down syndrome. Since his diagnosis, he has had 2 surgeries and been hospitalized 3 separate times. He receives therapy 2 times per week and is on a special diet. He is a beautiful boy, full of joy. His immune system is weak and so are his muscles, but his heart is strong and his smile is huge!
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Our precious Isabel Ruth was born on June 24, 2008 with a Congenital Diaphragmatic Hernia. This is a severe birth defect in which the diaphragm doesn’t fully form in utero. this allows the abdominal organs to move up into the chest cavity, significantly restricting lung growth. Our tiny little miracle endured many surgeries, including the hernia surgery, ECMO, PDA (heart defect) repair, and Fundoplication and g-tube surgery due to aspiration issues. Isabel was also diagnosed with a disease called Pulmonary Arterial Hypertension which is secondary to her Chronic Lung Disease. Our princess was able to come home after one hundred and fifteen days in the Neonatal Intensive Care Unit! Isabel has been fighting ever since! She is home on oxygen and has a feeding tube. Isabel also has some severe developmental delays including Hypotonia. Despite Isabel’s rough beginning, she is a happy and joyful little girl! Isabel amazes us every day, and her resilience teaches us volumes of the human spirit! As Isabel continues to thrive, we are confident that God has huge things in store for our little girl!
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On February 8th 2009 James seemed to be coming down with a stomach bug after a tough afternoon we brought him to the doctor when he started to seem lethargic. A few minutes in the doctors office and he stopped breathing. An ambulance was called and were rushed to the hospital. After a series of tests we realized he was in diabetic ketoacidosis. We spent one week in ICU and another week in recovery. James was only 21 months when all this started and he was a fighter from day one. Type 1 diabetes is an autoimmune disease where your body attacks and kills your pancreas. Without your pancreas to produce insulin you must take injections of insulin. James takes about 5 injections before every meal and has to take blood from his finger 10 times a day. In the first year with diabetes he has taken 1,300 injections and 3,330 finger sticks. He has recently gone on an insulin pump that minimizes the amount of injections a day. My son before the age of 2 became my hero. There is something so courageous about a two year old taking multiple injections a day to keep himself alive. We dream of having a cure before the complications of diabetes catch up to him. He is an amazing child and the true definition of a little hero.
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This is Gracelyn and she has Cystic Fibrosis. Every day she has to take several medications, breathing treatments and chest percussion therapy to help keep her healthy. Even though there is no cure for her disease, she never stops fighting. She is the happiest, most outgoing baby you will ever meet. You would never know by looking at her what she goes through on a daily basis. She is a hero in my eyes. And every day I tell myself that if she an keep smiling through all of this, so can I.
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Zoe was born at the end of December in New York City. Before birth we knew her heart was going to be repaired within the first few months of her life. When she was born she was so full of energy, such a happy little baby. She loved to eat, play and sleep. At barely one month she could track different objects with her eyes and started smiling soon after. Our visits to the cardiologist were full of optimism since she was doing so well. At six weeks old, she went into congestive heart failure overnight. Her heart was working too hard and she needed external help to deal with it. She was put on a few medications and sent home after a week in the hospital. She did relatively well for a few days, but a week later, she stopped eating, slept all day, and we took her back to the hospital. We spent a whole week there, and she turned two months there. Every imaginable test was done, MRIs, EEGs, blood tests, scans, x-rays. My little warrior was so brave and even though she was poked multiple times a day she kept her good humor. After a few days we went back home, Zoe with a feeding tube. She gets too tired eating and we need to help her. Now we are waiting to see if she grows enough so her heart is big enough to undergo surgery. In the meantime, she’s a happy little girl at home, and hopefully, soon enough all this will be a distant memory!
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Ava is 1 ½ years old. She has a duplication on chromosome #22. This results in very low muscle tone, feeding issues, and other medical complications and developmental delays in all areas. Although her diagnosis is not thought to be life-threatening, her prognosis is unknown. There is no way to know if she will ever walk or talk. She receives physical, occupational, and speech therapy each week. She is really making progress. She is still working on rolling over and holding her head up, but she is so much stronger than she used to be. We believe that she understands what she is being asked to do, but she can’t always get her body to do it. She keeps trying until she is successful. Ava loves to play with people and is extremely social. She will ‘talk’ and ‘tell stories’ to people. She loves playing peek-a-boo and beeping daddy’s nose. She loves being kissed, hugged, and tickled. Ava also likes to help mommy turn the pages in the books and watch her big brother, Jack, jump around and act silly. Despite her delays and low muscle tone, Ava has won the hearts of everyone near her. She tries and tries to get her body to work. She is the most persistent and motivated person I have ever had the pleasure to meet. We are so blessed to have her in our lives. She teaches us the true meaning of patience, determination, and happiness.
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Ramona was diagnosed with a complicated CHD–Hypoplastic Right Heart Syndrome–while still in the womb. Fortunately, she did so well after birth that she didn’t have to have her first heart surgery until she was 3 months old. After this heart surgery, she developed numerous complications and had to stay in intensive care. She wasn’t allowed to eat anything by mouth for 2 1/2 months. During this time, she received all her nutrition through iv fluids that went in through a line in her groin. After she got the go-ahead to start eating again, she had lost all interest in food, and eventually had a gastronomy feeding tube placed. Ramona spent a total of 3 out of the first 7 months of her life in the hospital, and has had 4 surgeries. She will be having another open-heart surgery when she turns 3 years old. Ramona has the most outgoing and sparkly personality, and even through all her hardships and hospital time, she has never stopped smiling and laughing. She even had nurses in the hospital competing over who was going to take care of her! Ramona is a complete joy, and every day my husband and I count ourselves lucky to have her in our lives.
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Christopher Pena was born in April 2008 with non-compacted cardiomyopathy. Non-compacted cardiomyopathy is a very rare condition in which the heart muscle remains sponge-like after birth, which causes the heart to be very weak. Christopher’s cardiomyopathy affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Christopher was not given very long to live. Six months at most When he was 45 days old, he was admitted into hospice care where he remained for 15 months. Christopher was released from hospice when an echo cardiogram showed that his heart function had tripled! And at 18 months, his heart function was almost normal. In February 2010, it was discovered that Barth Syndrome is the cause of Christopher’s cardiomyopathy. There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. Given a life span of 6 months or less, Christopher celebrated his 2nd birthday this past April. The Pena family gives all glory to God for their little hero’s miraculous life!
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Liam also has a ectopic right kidney and hypoplastic right lung Born was 37 weeks – Liam has his first repair at 6 days. Unfortunately at 3 months Liam’s diaphragm re-herniated and he had to have another repair. Liam spent 5 months in Hospital, came home on oxygen and a NG Tube. 2 weeks before his first birthday he came off the oxygen. Liam had severe reflux and major feeding issues. At the age of 3 years a friend told us about a feeding clinic in Charlottessville, Virginia USA – we packed our family of 4 up and travelled from Perth Western Australia all the way to VA to have a 2 week stay at a feeding clinic. 5 minutes into the first day and our dear Liam swallowed food for the very first time. Seeing this was so amazing…a trip we would make again in a heart beat. Liam has been tube free from the age of 3 years and 9 months. Liam has a pectus excavatum its severe – nothing stops him! He does swimming, soccer and karate weekly and he LOVES IT!!! Liam has a zest for life – he is an absolute joy to be with, his strength and determination are inspiring – He is our hero!
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Jaslynn was diagnosed with retractable epilepsy at the young age of 6 months. Shis is currently taking four seizure medications and will be getting Temporal Lobectomy in May 2010 to help reduce her seizures. She is globally developmentally delayed, vision impaired, and has a brain abnormality. She has the sweetest personality and loves to be held and cuddled.
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Xavier Gallergos was born May 4th 2009 with Hypoplastic Left Heart Syndrome
He was born premature and had his first bypass operation at 36 hours old
and weighing 2 pounds 11 ounces. His first few weeks of life were very touch
and go. He had a second operation at 4 months old and will face another one
next year. Xavier is on lots of medications to substain his heart function
one being to prevent him from any further svt. He really is a hero!
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Brayton is a fighter. At the young age of 2 months old, he became very sick and began the fight for his life. He was diagnosed with a rare disorder called HLH and received his first chemotherapy treatment at 2 months old. On April 23, 2009, at the age of four months old, he received his life saving bone marrow transplant. A bone marrow transplant is the only known cure for this disease. Brayton fought an up hill battle spending 294 days living in the hospital due to complications. He is finally at home where he belongs doing better then ever as he continues on the road to recovery. He is nothing short of a miracle!
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Ruby is the youngest of 11 children.We found out about her diagnoses of Down syndrome when she was born.She spent three weeks in the NICU after her birth.She has been a wonderful blessing to our family. All of her siblings adore her! Even with everything she goes through she still is able to smile!
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My husband and I went through multiple fertility treatments to have our three-year-old son, Fletcher. So naturally I thought we would have to do the same to have any more children…Wrong! In May of 2008 I found out I was pregnant! We were overcome with joy, which then turned to concern because blood test showed Mary Caitlin might have down syndrome. We did not know for sure until she was born that she did have DS. But, I have to tell you, I would not take it away from her, it is who she is. She is beautiful, funny, silly, rotten, sneaky, cuddly, bossy, and she is our daughter! We have been blessed that she has had no major health issues so far. Her big brother adores her and she adores him. Our family is beautiful!
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I have two beautiful children. They were born with hypotonia. Aidan, 5 yo started OT and PT at 4 mos old and then ST and feeding therapy at 15 mos. Around that time he was diagnosed with global dyspraxia; a motor planning disorder that our neurologist likens to driving without the steering attached to the suspension. Aidan was always climbing on to ride- only to find himself facing the wrong way. He may know the word for something, or even be able to describe a letter or number, but at ceratin times there is a disconnect and he is unable to get his mouth to say what is in his mind. He was also diagnosed with sensory processing disorder; he flinched when other children came near him, cried and covered his ears in crowds or at parties and vomited the first time he saw (not touched) playdoh. He has global developmental delays.
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Caitlin, 3 years old was also born with hypotonia. She also had tracheomalacia (her trachea would collapse and she would temporarily feel that she couldn’t get enough air). She was also born with torticollis and plagicephaly. The neurologist felt that she was so low tone in the womb that she couldn’t lift her head, so the muscle in her neck shortened causing her head to tilt to one side (torticollis) and her skull became flattened on one side (plagiocephaly). She started PT at 2 months old and with alot of hard work those two things were resolved. Caitlin recently started in a preschool disabled program that her brother attended last year. She receives ST, OT and PT to address her developmental delays. She wears orthotics and a special suit known as a benik vest and shorts to help her find her center of gravity. She had poor balance and would often flail her arms and legs while walking. She fell often. The benik suit is a compression garment and the idea is that it helps make her more aware of her body. We just have to be careful now that the warmer months are upon us that she only wear it in air condtioning. Cailtin had her work cut out for her when she came along. Aidan was extremely jealous and very attached to me and I could not leave them alone because he was aggressive. But no matter what he did she was so forgiving and nurturing of him. He used to refuse to show her the things he drew at school because she wanted to see them. But each day she would sit next to him when he opened his book bag and say “Aidan, it’s soo booootiful!” and ask to hang it up. She’s completely won him over and he is learning so much from her about sharing and friendship.
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Meet Nolan! Nolan was a happy and chubby baby when his doctor heard a heart murmur at his 6 month well-baby visit. His pediatrician didn’t expect there to be any problems, but sent us to a specialist just to be sure. We’re awful glad she did, because the cardiologist found Nolan had a coarctation of the aorta and bicuspid aortic valve. Two weeks later, he had surgery at the wonderful Children’s Hospital in Omaha, NE. He had a rough time for a few days post-op, but has been doing well since then! He will have to be seen by a cardiologist for the rest of his life, there is always a risk that his coarctation may reappear and it’ll have to be corrected again. His bicuspid valve is operating perfectly for now, but he will be monitored to make sure it continues to do so. He’s our little peanut; he has a hard time gaining weight. But he’s the toughest guy we know!
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Olivia Gabriella Bellini was born on March 2, 2009 has been through so much in just her first year of life. She was 8lbs 8oz, beautiful…perfect. By day 2 she started to show signs of an infection, by day 4 had an enlarged spleen and low platelets… more symptoms kept coming. We searched for 5 months meeting with various specialists to find an answer and finally near the end of August 2009 we were struck with devastating news. Olivia had neuronopathic Gauchers Disease. Since then Olivia has undergone weekly infusions, 4 surgeries that include life port placement, life port revision, G-tube/Nissen, and a tracheostomy. She has had 7 weeks of hospitalization, countless bloodtests, MRI. She is an inspiration to everyone who meets her!
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Evan was born at 36 weeks. He spent his first month in the NICU due to pulmonary hypertension and feeding issues. Since that time he has been very healthy with only one other 3 day hospital stay. He is a very active boy. He especially loves to play catch with his sister or play with his cars and trucks. Evan started preschool in April and loves interacting with the other children. We are extremely blessed to have Evan in our family. He has taught me that life is about the journey, not the destination.
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Ronnie was born by emergency c-section after his heart rate dropped to 80 and did not recover. His Apgar scores were 9, and through my morphine haze, I vaguely remember catching a glimpse of him wrapped in a white blanket, those dark blue eyes trying to gather all that was happening. Daddy went with a nurse to the nursery to get him all cleaned up and meet me in my room. Our family was complete, two girls, one boy, and everything was fabulous. That’s when everything changed. Ronnie was settled into the NICU in his new “digs” and his nurse spoke with us and was talking about how beautiful he was. We asked “so, then he made it there?” and she responded that he was there, he was bathed and he was stable. A cardiac team would round soon and discuss his condition, order labs and tests and contact us soon with their diagnosis. Ronnie was over an hour away from us, and in a different state. “Your son has interrupted aortic arch, aortic stenosis, and a good sized ventricular septal defect. Do you understand?” “No.” Thanks to internet searches, talks with family members in the medical field and my own sense of urgency in understanding my son and making the best decisions for him, I started to understand everything. All was fine until October when his feet started to turn so purple they nearly looked black. Ronnie had a cardiac cath on October 20th, and admitted after the results showed that he had outgrown his Sano shunt. On October 22nd he had a modified B-T shunt and he was home 5 days later. This time around we all did much better, and I even have some memories of that period in time. Now, Ronnie is growing, and smiling, and developing like a cardiac patient . . . slowly but surely, and he is my hero. His cardiac team has decided to do a Rastelli procedure on Ronnie when he is big enough, and we are all optimistic.
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Almost 2 years to the day of our wedding we welcomed our son, Quade Nathaniel (Oct. 8th, 2009). I had a very uneventful pregnancy and was surprised when at 3 1/2 weeks early I was in labor. Within mere hours of his miraculous birth we were told Quade has Down Syndrome. In the hours to follow there were many emotions from joy, to sorrow, to questioning our ability to handle a special needs child and then back to joy. I’ve come to realize since his birth that down syndrome does not define my son. We will not put boundaries on his abilities. So what if he has an extra chromosome. Quade is progressing very well developmentally. He has physical, speech and development therapy once every other week. He loves therapy and his therapists love him. He is a very happy baby and loves to giggle at his daddy. He had some minor heart issues at birth, but we were told not to worry and recently he has been diagnosed with low thyroid so he is on a pill a day.
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Courtney (2) and her sister, Katelyn (4), both have Spina Bifida. Courtney was adopted this past April from China, and Katelyn was adopted in June 2008. Both girls have been such a blessing to our family. They have so much spunk and beautiful personalities and have already overcome so many obstacles. We look forward to seeing how their lives continue to unfold!
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Our little Jacob is a 4 year old boy who loves all of the Disney Pixar films. He is such a hard worker- who has a lot on his plate! He was born at 32 weeks and diagnosed officially at 2 years old. He is not currently able to walk independently, but his walker gets him where he needs to go. He works hard in 4 hours of therapies each week as well as 3 therapies at preschool! I see such a perseverence in this boy. Despite being globally developmental delayed, he tries and tried again to achieve his goals!
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Zach was born 6 weeks early at 6 pounds 6ozs. At 3 months old we noticed that he was having issues eating and we started a rollercoaster ride. InAugust of 2009, we got the diganoses of MITO, it helped us understand what was going on in his body. However, it is hard. We know at any point he can land in the hospital, last year in 2009 we spent 60days in the hospital and so far has spent 14 days in the hospital in 2010. The one thing that I can say about Zach is that his demeener is WONDERFUL and his smile is amazing. He teaches me every day and I know now that each day is a gift!
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Calvin was born October 17 2003. When he was 6 months old Calvin caught a cold. We new something was wrong when after 3 months he was still coughing. And not just any cough, he was coughing so much he was gagging. Doctor after doctor said he was fine. Until he started loosing weight. We were sent to a pediatrician who was able to shed some light. He was tested for Cystic Fibrosis and just a few days after his first birthday he was diagnosed. Today Calvin is 6 years old and loving grade 1. Life is not all fun and games for Calvin though. He frequently gets colds that can last anywhere from a week to a month or more. He has missed 30 days of school so far this year. Calvin has to endure an hour of physio therapy every day (that he does not like doing!) and take upwards of 20 pills every day. Calvin sometimes has to do inhaled treatments. Every day is a struggle to keep his weight up and his body healthy. We hope that one day there will be a cure and Calvin can ! be a normal boy who doesn’t have to worry about enzymes every time he eats, or doing his daily physio. We know there will be many difficult times ahead of Calvin in his life and like to give him any chance we can to just love life and be happy.
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Meet Seamus! This little guy truly is the string that binds us as a family. He is simply a joy and a pleasure. He is adorned by his older brother and sister. He has mosaic down Syndrome which is a rare form of down syndrome. Every milestone is cause for celebration in our house. We celebrate a lot!
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Our daughter Tsz-yan is nine year old is always happy and is a Blessing.. She loves the color pink, especially if it has sparkles, the princess, Tinker bell being her favorite. She love everything girly and must have a butterfly wand to accompany her in her adventures. Tsz-yan was blessed with Down Syndrome which helps her see the world with Rainbow colored glasses. Everyone is her friend and is greated with a huge smile and Hello. Nothing usually slows her down until the last year , recently we found out the problem, she is having some trouble with her heart. This causes her to have shortness of breath, get blue and be very tired.Tsz-yan is an amazing little girl who brings a smile where ever she goes. She is an amazing Blessing.

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Sam was born at 34 weeks 1 day after it was determined that he had an enlarged bladder that was not emptying properly and he was not reactive in the womb. After two days he did not pass his first stool they did a contrast test which showed he was blocked. They gave him a few more days but when he did not pass his first stool so he was operated on. He was given an ileostomy at six days old and the diagnosis of MMIHS. We were uncertain if Sam would be able to eat at all because usually children with this disease have entire digestive systems affected. Sam was given his first taste of food at nine days old and miraculously his small intestines processed that food and he passed stool into his teeny ostomy bag. Sam’s bladder problems have been luckily very minor. He is a miracle! He still has his ileostomy at three years old and it is undetermined if he will ever be rid of it because his colon is so tiny. They will not give us a picture for his future because his syndrome is so rare and they have very few cases like him on the books. We just enjoy each day to the fullest and pray he continues with his great current health. Sam is tiny for his age but is finally now on the growth charts! Have I said what a miracle he is? He is truly my hero! He does have some development delays which are unrelated to his syndrome we believe.
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Our son Lance was born 7-14-2003 with hypoplastic right heart ventricle, ASD,VSD. At the age of 6 months he had his first open heart surgery. We then had a somewhat calm 5 years. We had doctors appointments but we lived a normal life. Then Dec 2008 Lance started getting sicker. We scheduled his second Heart surgery and he had this surgery in April 2009. After this surgery his heart function went down hill and his kidneys shut down. The doctors tried everything, but after 2 months it became apparent he needed a new heart. After we got over the shock he was listed ,and five days later received his miracle heart. He was in the hospital 3 months, and it was a very scary time for us all. He came home in August 2009 and he was still very weak, but with time and love he is know thriving. He does have a lifetime of care and statics say that there will be future transplants. We are staying optimistic and with prayer and medical research we focus on the positive. He is about to be 7 and is now playing baseball and a fearless base runner. We are so Thankful to the donor family that gave so many people a second chance.
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Emery Jane was born at 8:30pm on March 13, 2009. We were more than a little overwhelmed and scared when Emery’s pediatrician showed up around 10pm that night to look her over. The first few days, especially in the hospital, were a blur of tears and emotions. We found out the morning following her birth that Miss Emery does have a heart defect as well. We are aware now that 50% of kids with Down syndrome also have a heart condition of some kind. But, at the time, we felt alone in the world. We had no idea what our world as parents would hold. Emery’s heart is still strong; we have been able to avoid the operating room and extended stay at Children’s Hospital. She is closely monitored by her cardiologist, and for that we are thankful. Emery crawls around the house, especially to chase her kitties! Emery loves to sing “Itsy Bitsy Spider.” She signs “mom” and “dad” and “eat.” She gives kisses and high fives. And, wow, when Emery smiles the room lights up. Emery is a true blessing to our lives. She has taught me more in one year about love, patience, acceptance, and tolerance than I realized possible. She has touched the lives of so many people–immediate family, extended family, and even strangers. We can’t imagine our lives without her, and all the fear we felt at the beginning has been replaced with unimaginable joy.
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Caitlin was born Dec. 7, 2007. She was born with a Hepatic Hemangioma, which caused her liver to fail. She spent many, many months in the ICU fighting for her life. Caitlin received her “Gift of Life” May 6, 2008. With her new liver Caitlin is doing well, she has battled a few rejection episodes and is more prone to sickness due to being immune supressed(she needs to be on life long immuno-suppressants to keep her body from rejecting her new liver.)But, she is a fighter and is the happiest little girl you ever did meet. We love her dearly!

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Meet beautiful Ella! Ella was born 7/8/09. 4 days after birth she was diagnosed with Pulmonary Atresia with IVS. She had a heart cath at 5 days old and Open heart surgery at 12 days old. She is now 10 months old and doing well! She will need more surgery possibly late this year early next to repair her broken heart. Ella is cheeky and perfect with a perfect broken heart! My beautiful Little Girl is the light of our lives!

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Olivia is a beautiful sassy little girl with a myriad of disorders and diagnosis’. You would never know it with the way she handles herself. One of her biggest hurdles to date has been being unable to eat anything more than a diet consisting almost entirely of medical grade formula. Olivia has had troubles since she was a tiny baby. She eats an Elemental formula now and has bloody stools if she ingests anything else. She has a great attitude and is a beautiful little girl and we love her. She does therapy 5+ times per week. Because of Olivia’s hurdles her speech is very delayed. But even with all she goes through, she is one of the happiest kids you will ever meet! We are thankful for all of the doctors and therapists that are working with Olivia to better her life and continue to keep her smiling and happy!

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Adia was born with Down Syndrome and a heart defect. She had open heart surgery to repair a large VSD and two small ASDs when she was 4 months old and weighed only 7 pounds.The surgery was successful and she is now two years old and soo amazing! Adia also has an older brother, 17 yr.old Sidney. Sidney was diagnosed July 6,2009 with Burketts Lymphoma. He had a large tumor wrapped around his small intestine and by the time he was diagnosed he had stage four cancer. Sidney just completed six months of agressive chemotherapy. The majority of that six months was spent in the pediatric intensive care unit. His prognosis is wonderful and the doctors expect him to carry on with his life cancer free.

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Daisy was born on February 16th, 2009 as a chubby, healthy baby. She brought so much love and happiness into our little family: dad Scott, mom Anne, and big brother Ezra. She was developing normally until 5 or 6 months when we noticed she wasn’t meeting all of her developmental milestones. She visited with her pediatrician when she was 7 months because she was not sitting up by herself. Daisy was given the initial diagnosis of benign congenital hypotonia, and sent to physical therapy to improve her muscle tone and strength. Her physical therapist was concerned it was something more than just hypotonia, so we visited a pediatric neurologist. After monitoring Daisy for several months, the doctor diagnosed her with cerebral palsy. Scott and I didn’t think it was cerebral palsy – there was something else. We just wanted the correct diagnosis. We don’t blame the doctors at all: they did the best they could do with the information !
they were given about Daisy’s condition. We went to two more specialists, ran some blood tests, and discovered that Daisy has Tay Sach’s disease. Unfortunately, there is no cure for Tay Sachs disease. Daisy cannot sit on her own. Daisy is now blind, and eventually will become deaf as well. As the disease progresses, Daisy will lose the ability to move her muscles, the ability to swallow, and the ability to breathe. Daisy has not, however, lost the ability to love. All she wants is to be loved, kissed, and hugged. She is just a gift, and we are so blessed to have her in our family!
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Meet the amazing Mr. Cooper! Cooper has been through so much in the last year and a half. Born without any complications and having been healthy the first year of his life, things started going wrong around 14 months. At that time Cooper lost the ability to swallow and developed respiratory problems. Within a few months he underwent a Nissen Fundoplication surgery and had to have a gtube (feeding tube) put in. Numerous other diagnosis followed and it was demonstrated that he has a progressive neuromuscular disorder – most likley a metabolic/mitochondrial myopathy. We also found out he had a chiari malformation and this past November, underwent a long brain surgery to repair that and some other malformations. Cooper currently struggles with dysphagia, respiratory failure, metabolic issues, hypotonia, vision problems, and seizures amongst other issues related to his condition.

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Jake is amazing. Dx shortly after birth with CF, he developed a fever when he was 2 weeks old. After admission to CHOP, he was dx with biliary atresia. he underwent a Kassai operation and spent his first two months of his life in the hospital. At somepoint, jake will need a liver transplant. He also developed life threatening food allergies. Life is wonderful for this very special boy. He tells us “don’t aske me how school was today – because it is great every day!” That is how jake views life. Everyday is wonderful! He is an amazing boy with two wonderful older siblings, Christian (16) and Alex (19). Christian also has Cystic Fibrosis. Although we would love for our children to be completely healthy, they are our heroes. Thru their illnesses they teach us everyday the true meaning of life!

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Meet Nathan Starr! This little hero was born on Valentines day 2009. At 2 months he was diagnosed with a very large mid-line arachnoid brain cyst which has caused agenesis of corpus callosum and hydrocephalus. He has had 2 brain surgeries one at 2 months and the other at 4 months. We are hopeful that there will not be anymore. Nathan is an awesome kid and we hope the best for his future which is uncertain. Despite all odds Nathan lives life happily like any other little boy!

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Kayla is a beautiful energetic 6 year old who was born with a rare syndrome which exposes her to multiple forms of cancer for the rest of her life. She has already survived a double cancerous brain tumor with many after effects including hearing loss, nuerological problems, brittle bones and severe skin cancer over her body. She lives with her disabled grandmother who has legal custody of her. They are each others support and live life to it’s fullest everyday!

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Lucas Boucher was born to wondeful parent who were not able to give him the care he needed. so when he was 7 months old and only 8lbs, they decided to give him up for adoption to a family do didnt have children of their own. Since then Lucas has been on a roller coaster ride. In and out of the hospital for different surgeries and procedures. he’s developmentally delayed, severe sleep apnea, Reactive Airway, but for some reason has genetics stumped on his specific diagnosis. nevertheless, he is such a happy 3 (almost 4) year old boy, who welcomed a little bother in to the family in 2008.

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Before Doug was born, we knew he was special. He was diagnosed with congenital heart disease when he was only 22 weeks old. When he was born, we found out he had many more issues. He had open heart surgery when he was only 6 days old. Afer his surgery, we found out that his intestines were malrotated, so he had surgery to repair them, and a G-tube placed. He also had surgery to allow him to breathe through his nose. He was diagnosed with Noonan Syndrome. After spending 57 days in the NICU, he came home. He has spent the first year of his life fighting and learning how to be a baby. He bravely faced his second open heart surgery at 12 months old. He is now growing into a feisty toddler. He still has many challenges to overcome, but he is a fighter and will make it through.

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Meet Anna Banana Pants! Anna was diagnosed with Down syndrome shortly after she was born. She has some developmental delays, but is working hard in therapy to continue to progress, learn, and meet milestones. We have learned that it does not matter when she meets her milestones, only that she continues to meet them. In her first 2 years of life, Anna has struggled with croup and pneumonia during the winter months, and has been admitted to the hospital on more than one occasion for treatments. She has also had eye surgery twice, and will most likely need it again in a couple of months. But, none of that matters because Anna is the sweetest, happiest, most content little girl you will ever meet. She lights up the room with her smile, and warms your heart with her hugs. She radiates innocence and love. Each day, Anna reminds us how great our God is!

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When Oisin was 6months old he was diagnosed with an extremely rare cranial nerve disorder (only 8 world wide). This cruel and unfortunate affliction has resulted in Oisin losing 75% of his eyesight by the time he was 9 months old. Unfortunately he is also deaf. When he was about 7 months old he underwent an extremely devastating operation which involved both his eye lids being sewn together in an attempt to reduce the risk of further damage to his corneas. Oisin was born a delightful child, with the most endearing, loving personality. He never grumbles or moans about his condition, he humbly accepts that it is to be. He is kind and considerate and is now a very proud big brother to Zac, a much longed for sibling! Oisin has to miss out on so much in life because of his condition and life often revolves around lengthy trips to the hospital.His photo shoot meant so much to Oisin! A chance for him to shine like the star that he is!

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April will be 6 this month and was diagnosed with her rare Chromosone Disorder in January 2005 at 9 months, to be very briefly summarise our story, we had no idea that anything was wrong with April until July 2004 when she was a few months old our GP noticed that she was not fixating on objects this then rollercoastered into seeing many many professionals and a stay at the Royal Victoria Childrens Hospital – Belfast for many assessments and rigourous tests after which a diagnosis was then made. April then 2 years later was diagnosed with Autism yet another devastating blow to us her family. Due to her disorder being so rare we had and have no idea what the future holds for April. April receives regular Physiotherapy, Occupational Therapy and Speech and Language Therapy and attends a local Special School called Rathore in Newry which she loves. April has no speech and still walks with a gait and is fully dependent on us for all her needs. April is a beautiful, content wee girl who we could not live without.

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We adopted our beautiful son, Evan, from Bulgaria when he was 3 1/2 years old and quickly realized he was “special” with Autism. After 13 years of tough therapy, schooling and love, he is becoming an amazing young man that we would love to celebrate. He is a hero in every sense of the word when you see where he came from to who he is today.

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Isabelle (or Dolly as she is known to family and friends) was born 14 weeks prematurely. She spent 2 months in Wellington NICU, and one month in a maturnity ward in Blenheim. At 5 days old Dolly was diagnosed with a grade iv bleed, then a at two weeks old we were told she had hydrocephalus. At 3 weeks old she had brain surgery to insert a resevoir to enable the neurosurgeon to withdraw fluid from her brain. While in hospital she underwent numerous procedures including blood transfusions, brain scans, heart scans and no end of blood tests but would not complain. Two months ago she had her PDA closed and is going from strength to strength. She has gone through too much for one little girl, I wished that I could swap places with her. But now she is the happiest little girl you will meet, and a complete show off! She is our miracle.

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Allie was born with a complex congential heart defect. Within 2 hours of being born, Allie was wisked off for her Norwood stage 1 surgery to correct the problem. When we finally got to see her in the PICU, it was heartbreaking to see her connected to all sorts of wires and monitors… but what a fighter she is! It took 22 days, but she was finally released and cleared to go home. There have been quite a few bumps in the road to wellness, including several visits to the cath lab, another heart surgery (the Glenn procedure), and an untold number of blood draws, but Allie has surprised us with her strength and unfaltering spirit through all of this. Allie is approaching 9 months old now. She flirts with her daddy. She loves her big sister. She takes comfort in her mommy’s arms. Allie’s smile is so bright and vibrant; everything about her looks and actions appear the way they should–it’s hard to believe she has a broken heart. But she’s strong and has no plans to give up. She has some more battles to win!

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Meet Peyton! He is a happy 19 month old little boy who has CP that has affected his right side he dosen’t let that slow him down much he works around it. Its amazing watching him play and interact with other kids that don’t have CP most people would say hes 100 % normal but once you get to know him you see him struggle and act differently then most children. But hes ok with it and so are we! No matter what he faces, he is always a hero in our eyes. He does the best he can, with what he can and we cannot ask for more. He is a typical boy that just happens to be ‘special’! he LOVES Thomas the train and enjoys eating grapes!

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For the first 4 years of her life, Tatyanna was just like any other little girl. She loved dancing, Disney movies and was crazy about horses. She had more energy than we knew what to do with! Shortly after her 4th birthday we noticed that our once active child was becoming increasingly clumsy and would frequently trip and fall. We became concerned that perhaps she was having seizures and began what became a lengthy diagnostic ordeal. What started as a few “drop seizures” a day turned into many more of differing types and severity. One week before her 5th birthday, Tatyanna was diagnosed with Late Infantile Batten Disease, a degenerative neurological condition. Over the last 2 years her condition has deteriorated but her spirit has not diminished. Tatyanna continues to inspire those around her with her courage and smile that can light up the darkest room. We know that the road ahead is not easy but we will continue to fight for our brave little girl.
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Jordan seemed to be a healthy baby until she turned 4 months old. She started to develop some chest problems and after being hospitalised twice she was diagnosed with Asthma. It wasn’t long before the doctors realised that Jordan’s asthma was very difficult to control. They then diagnosed her with Brittle Asthma. She continues to have asthma flare ups on a regular basis with chronic chest infections. Jordan struggles with the symptoms of both complaints. School life for Jordan is so difficult. She hates missing school and finds it hard to rebuild friendships after a period of illness. She is always trying to catch up on missed school work. This last year has been really bad for Jordan. She now attends a Specialist in Respiratory Medicine and is trying new medications to gain control of the asthma. She suffers regular chest infections which can require aggressive antibiotic and steroid treatment. Jordan is my little hero, because she wears a smile on her face every single day. She never complains about taking medications and she never ever lets the illness win. She fights through every flare up, Jordan appreciates every breath she takes!!!

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Emily and Abigail were diagnosed with Autism Disorder in March of 2009. Since their diagnosis, Emily has fought hard and come a long, long way. Abigail has fought just as hard, but has a long hard road ahead of her. At 3 and a half years old, Emily is learning to play with other children and is really starting to talk up a storm. Abigail is still non-verbal, but is really coming along with her eye contact and affection. Both girls are inspirations to all that meet and get to know them!

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David is a happy and charming little boy. He loves people and brings joy to all those who know him.
Prader-Willi syndrome is rare (1 in 15,000 births). PWS results in a malfunction of the hypothalamus in the brain. This causes an insatiable appetite (his tummy never experiences the sensation of being full, even after eating a huge amount of food). People/children with PWS have hypherphagia which is a strong biochemical urge to eat all the time. If not supervised constantly, those with PWS can literally eat until their stomach bursts. They can die or become very obese in a short time. Along with these things, PWS also causes low muscle tone throughout the entire body leading to delays in walking, talking and much more. They require extensive physical therapy, occupational therapy, speech therapy, and special education. The costs to the family or substantial, but the therapies are worth the benefits.

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In 2002 a baby boy enters the world with a scream like no other. His early years were loud, confusing, tiring and fraught with questions about his physical, mental, and emotional health. After 4+ years of searching for answers, we heard the word autism. Hayden had a reason for not understanding language in a typical way. We now knew why we couldn’t go to the store without a meltdown as we passed the toy train department. We found out that he didn’t play well with other kids because he didn’t know how to play. A year later the screaming started to decrease and his language improved. We spent a good deal of our lives at doctors and therapists, of all kinds, trying to create the best life for him. As we worked through all of his health problems and maneuvering through the complexities of autism we started to see more and more successes. Hayden is the hardest working kid I have ever met. He has worked almost every day of his life trying to overcome his deficits. Even when he is tired he pushes forward. He is a hero. This year he attends a typical public school and is fully included in his classroom. Most people will never know how hard our journey has been because he is such a loving and communicative child now
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My name is Marco.I am 3 years old and almost turning 4.My life is not easy.I was born with critical aortic stenosis.Doctors found out about my heart defect only few hours after my birth.When I was only 9 hours old they transfered me to one of the best kids hospital in the world.I was so sick that doctors where not sure if I would make that transfer.And this hospital was only cross the street.But I did.After one month being on full life support and fighting for my little life,doctors told me that my only chance to survive is heart transplant. After 4 days on transplant list my gift of life was given to me,giving me a second chance to live. After 12 days post heart transplant I could go home.My first year after transplant was amazing but after that,I went through a lots of ups and downs.I was hospitalized many times.I had ng tube put in in september 2008,changed it to g tube in january 2009 and still has it.It’s not fun at all.I went through a lots of scans,biopsies,blood work once a month sometimes more often,scopes and so on.The most recent and major thing that happened to me in december 2009 was an emergency surgery for my bowel.During my colonoscopy I stopped breathing,had CPR for 12 minutes,had a surgery and end up with colostomy for now.Hopefully I will gain fast and doctors will close that up.So this is me.I am really thanksfull to my donor and my parents.

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Carter is the youngest sibling out of three. By the age of two, Carter’s parent’s noticed his lack of speech and limited communication. Carter also did not point or give many social smiles. Through in home therapy sessions Carter did gain some words and even speaks in 2 word sentences. However just before his third birthday, Carter was officially diagnosed with PDD-NOS which is on the autism spectrum. He has just began a special pre-school class for children with special needs and seems to really enjoy it. We have high hopes for Carter but we know that the things most kids learn easily will not be as easy for him.

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My son Daniel was born at 34 weeks at Westchester Medical Center. He stayed in the NICU for one week to work on his breathing, sucking and swallowing. He was also under weight. We started Early Intervention at three months because of very low muscle tone. We gradually began incorporating occupational therapy, speech therapy and special education because he was not meeting his milestones. At 18 months, he was diagnosed with GDD and at 23 months he was diagnosed with autism. Even with all Daniel faces, he smile rarely leaves his face!

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On April 28 2009 my beautiful daughter Fiona Grace was born. The delivery was difficult and she went into distress and when her heart rate hit 68 I was rushed into the OR. The next day as I held my perfect baby girl I thought that we were out of the woods. At 2:30pm they came and took her from my arms in the middle of feeding her so that she could get an echo since she had a heart murmur and they wanted to be on the safe side. Then I waited freaking out for the pediatric cardiology team to arrive. When they came in they brought me a picture of Fiona’s heart and a normal heart and slowly went through a laundry list of CHDs: a severe CoA w/a hypoplastic arch, PDA, BAV, PFO, small left vent. Then the NICU doctor came in and she told me that Fiona was being stabilized and that she would need heart surgery sometime in the next 2 wks, but that it wouldn’t be today or tomorrow. he has also battled with severe constipation and had reflux. Despite her slow gain and feeding problems in the beginning she is following her own growth curve and was 17lb 2oz at 9 months old. Her PHT is finally under control and we were able to wean her from her last med, Sildenafil about 1 month ago (hoping that we can stay that way). Even though we know that she will need at least 1 more heart surgery we just try to focus on taking each day as it comes. I am simply amazed by everything that she does, she crawls, cruises, gives kisses, and says hi. She is my hero and I am so blessed that I was chosen to be the mom of such an incredibly strong little girl.

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My name is Dominic and I am living with Cerebral Palsy. I was born March 29, 2006 in Las Vegas, Nevada. I am my mommy’s miracle baby! I was born by emergency c-section 2 months early. I came into the world weighing 3 lbs. 12 oz. and was 16 1/2 inches long. A little guy to say the least. But my heart is as big as the sea. I spent my first 3 weeks away from my mom in the NICU at Sunrise Children’s Hospital. I was born a fighter and continue to fight every day! I finally got to go home the day after my mom’s 35th birthday. I was a good baby, although I was never a good sleeper. My mommy says that by the time I was about 3 months old, I wasn’t holding my head up, hated being on my tummy, and couldn’t roll over. But my doctor wasn’t to concerned. He said that babies develop at different rates, and just to give me a little more time. In October of 2007, at 18 months old, I saw a neurologist to see what was wrong with me. My Aunt Linda, who is a P.E. teacher, has lots of experience working with kids with Special Needs. She said she was sure that I had something called Cerebral Palsy. Cerebral Palsy, or CP, is a brain injury that is caused by lack of oxygen in utero, during delivery or shortly after birth. It is a disability that affects my muscle movement and coordination, speech, and swallowing and eating. d someone somewhere to help me help myself, I believe my life can be better, easier, and happier. I am working so hard to get there. I just really need a helping hand. I know that I’m worth it.

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Meet Dakin!! Dakin is a very strong little guy fighting SMARD. What is SMARD? Spinal Muscular Atrophy with Respiratory Distress (SMARD) is part of the Spinal Muscular Atrophy family of disease. It is a motor neuron disease, meaning there is progressive destruction of cells that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. It is an autosomal recessive disease, meaning in theory both my husband and I carry the mutations that cause SMARD (this is as yet to be determined–we still need to be tested). Testing is done through bloodwork and was, until very recently, unavailable in the United States. Dakin’s work was sent to England. Initial testing took 3 months and the final, definitive test was not completed until a YEAR after the blood was submitted, though his is a less usual case–he has two different mutations. Even with everything Dakin has been through, you cannot keep the smile from his face! His courage truly is amazing!

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At 18 months old Ollie was diagnosed with a Chronic Kidney disease called Nephrotic Syndrome ….. we basically spent the next 12 months in and out of hospital trying to get Ollie well He was so bloated with fluid and ended up with many other complications as a result of his kidney problem. It was one hell of a year and a roller coaster ride I would sooner forget. Ollie is still on a lot of very “heavy” immunosuppresive drugs to help fight this disease but we are basking in the joy of “remission” for the last 10 months now. What the future holds, who knows as there is currently no cure for this disease. We live each day and make the most of it! He is a very happy typical 3 1/2 yr old boy who also happens to be a hero!

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Arayah was born March 26, 2009 with Hypo Plastic Left Heart Complex and Shone’s Syndrome. Also, they believe she may has Turner’s Syndrome too. Arayah had her first open heart surgery (OHS) at 6days old on April 1, 2009, Then at 2 1/2 months old Arayah was hospitalized for poor feds due to the fact that she couldn’t breath when she ate. So at 3 months old she had her first heart cath to re-open her ASD. Then at 6 months old Arayah got RSV and was again hospitalized. At 7 months old Arayah had her 2nd OHS to correct what they could of her heart defects. And at 10 months old Arayah started having trouble breathing due to a narrowing of her trachea so again she was in the hospital. Now on March 11 she will have surgery to try and fix the narrowing in her Trachea and they will be putting tubes in her ears to help her hear better and to combat the ear infections. This will be her 4th surgery and and 7th stay in the hospital.

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Our son Zachary was only 2 ½ years old when he was diagnosed with Leukemia on 3/23/07. He underwent extensive treatment of chemotherapy, radiation and steroids for two years. On 1/06/10 he had a relapse of his leukemia after being off treatment for only 7 months. Zachary has been at Childrens Hospital Boston since that time receiving aggressive treatment to get his body back into remission and in preparation for a bone marrow transplant anticipated in early April. Zachary is an energetic boy who enjoys school, is very outgoing and loved by everyone, has a yonger brother named Liam (age 3), his favorite color is red, went on his Make A Wish trip to Hawaii and wants to be a chef!
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Meet Aidan! Aidan is a very strong boy who is fighting Shwachman Diamond Syndrome, Adrenal Insufficiency, Pancreatic Insufficiency, etc. Aidan’s prognosis is unknown at this time because of the complexity of his multiple medical issues. Aidan is doing fairly well right now, but injury or illness could put Aidan’s life at immediate risk. Shwachman Diamond Syndrome also has a high probability of causing certain types of leukemia, so his prognosis also depends on whether his bone marrow failure develops into leukemia. Even with everything Aidan has to go through he still comes through with a smile on his face. He reminds everyone he meets what being strong really means!

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Our precious little baby was firstly diagnosed with Talipes when he was born. This wasn’t a major issue as it was easily repaired. Aswell as Talipes, Ali was a few months later diagnosed with Ptosis, which is also not a major issue but will be fixed before he attends school. On a routine visit to the pediatrician at 6months old , the Doctor noticed that Ali had a heart murmur, then after a few tests, he was diagnosed with Tetrology of Fallot (TOF) meaning he had four things wrong with his heart. Ali had open heart surgery at 8months old, and although things went well, he is still being monitored closely as future surgeries could become possible due to Pulmonary valve stenosis . At present he is back to being the bubbly, beautiful baby boy he has always been, and doesn’t look like slowing down any time soon. We are so blessed to have such talented Doctors.

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Savanna​h came into the world screaming. Daddy thought there might have been garage doors opening in nearby neighborhoo​ds by the shrill screams that came from this little body. Things soon settled down but only for a short time. After getting Savannah to the nursery to have her checked out and get her vitals, we discovered that things were not going to go quite as smoothly as we had planned. Once they got her in the NICU, it seemed that everything started to come apart for us. They began to find things that concerned the doctors. Over the course of the next 31 days, we were on a roller coaster of emotions as we were told of the various things that Savannah was having trouble with. We found that she had more heart issues such as a bicuspid aortic valve (a lot of people have this and are not aware), Atrial Septal Defect (ASD, a hole between the two upper chambers), Ventrical Septal Defect (VSD, a hold between the two lower chambers), pulmonary stenosis (a narrowing of the valve from the right ventricle to the pulmonary artery to the lungs). Savannah has had many hospitalizations for things such as RSV, pneumonia, respiratory distress, among many others. She had a colostomy for 3 months in 2008 – half of her large intestine was removed. She had a trach placed in March 2008 and had it removed September 2009. Savannah started pre-school last September at Gateway Education Center – a school for children with special needs. She is doing well and loving school. She also loves playing with her little sister, Morgan, who is 18 months old.

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Our daughter, AnnaLee, was dignosed at our 20 week ultrasound with a cleft lip and cleft palate. She will have to undergo numerous surgeries as an infant to repair her lip and when she is 5 years old, she will undergo the surgeries to repair the cleft palate. Since the cleft is in her hard palate, they will have to do a bone graft. This will also cause her to have a lot of problems with her teeth and appearance for many, many years to come. Oral surgeries and a small nose reconstruction surgery will also be a part of her future. She has so many challenges to face with hearing/ear infections, poor sucking reflex, acid reflux, and getting too much air through the clefts causing stomach problems and a lot of pain for her. The biggest struggle for her and us is feeding and trying to get her to suck with special bottles. As of right now, tests show there are no other genetic disorders, but further testing will be done later to check developmental milestones. We are blessed that this is something that over time can be fixed, but she has a long, hard road ahead of her (physically and emotionally). People can be so cruel about facial deformaties, but God has made her special for a reason, so I hope that through or faith and love she can be an inspiration to others who face this disorder.

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Meet Riley. She was born December 30, 2008 with a severe CHD. We had no idea until she was born blue and lifeless. She was diagnosed with Transposition of the Great Arteries. Riley was taken to a local Children’s Hospital for her first surgery at 8 hours old. 3 days later we flew to Washington, DC for open heart surgery. The hardest part was handing her to the surgeon praying for the best outcome but knowing there is a great possibility that the worst could happen. I can say nothing, can prepare you for seeing your child after surgery. Each cardiology visit, every 6 months, we get off some meds and one day there will be other procedures but when that time comes, I can handle it because she has taught me how to have faith. By the grace of God, I get to wake up everyday with my daughter. Her journey has just begun and will be an issue all her life. and I cherish each day I have with her because who knows what the next day brings. Riley has taught me about adversity, strength, and love. My faith has grown and that smile she has can melt your heart. She may know what happened at 5 days old, but she is God’s angel on earth and I wouldn’t change it for the world!

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Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children’s Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah’s brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devistating news. Noah had suffered “global devistation” to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Noah’s miracle has brought our story to all of you.

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Meet Joshua. At 18 months he was diagnosed with mild cerebral palsy, but his specialists feel there is more to the picture (or perhaps another diagnosis altogether). His MRI, in short terms, shows what a much younger child’s brain should look like, and “they” do not know why yet. He struggles with eating and movement, but has recently begun to obtain a lot of words. He attends physical therapy, feeding therapy, occupational therapy and speech therapy weekly. In addition to that, we have many doctors appointments to keep up with his care and search for answers. Any sense of “normal” is gone, but it is OUR normal, and we do our best. Joshua is a very happy little boy.

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I am Kamdon Boe Faudree and I was diagnosed with Hypoplastic Left Heart Syndrome. I have had two heart surgeries, The Norwood and The Glenn. I am scheduled for the Fontan on March 12, 2010. I am pretty strong and big too. The doctor says I am a good candidate for the Fontan so I’m not worried. I have a lot of friends that have already done this I can turn to, after all 1 in 100 kids are born with a CHD. But I pray with my mommy and daddy all the time, and thank the Lord above for my life. A lot of my friends don’t live to see there first birthday, and I’m getting ready to have my third?!?!? If you know a baby with a CHD, tell them about me and that they aren’t the only one around. Be brave and believe, thats all we can do! : )

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Meet Breezy, she has Cystic Fibrosis (a genetic disease that is manageable yet unpredictable) . The average life expectance for a CF patient is only 37 years old. I hope that Breezy will live much longer but the thought of losing her at anytime is always looming in the back of my mind. I believe The Littlest Heroes Project is doing wonderful things for families who have above average daily struggles. Care giving for your child who has an illness is a burden on a parent’s heart. Seeing a child suffer is a hard thing to deal with. The LHP is helping ease that burden even if only for an hour they are giving families and children a moment to stop and just appreciate life. And even better capture that moment forever.

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Meet Taylor. Taylor was diagnosed in Sept 2006 with Osteosarcoma in her right humerous. She was 11 yrs old. She had ten months of chemo, major reconstruction, a g-tube placed, biopsy, more weeks spent in the hospital than out during that time. All her chemo was in patient, she had many units of blood and platelets during treatment, lost 17 pounds during that time. Taylor is 14 and in the 9th grade. Because of all the chemo treatment and low counts/ flu season, etc, Taylor has been on homebound school for 8th and 9th grades. Our prayer daily is that this will be the treatment to keep her cancer free. We Pray daily for an Earthly healing for Taylor from this horrible disease that has taken up so much of her young life. We are faithful in her treatment and Earthly healing. We have watched so many sweet young friends loose their battle and gain their healing, only in Heaven. We spend as much time as possible trying to make sure that as many people as possible know about Childhood cancer and the need for a cure.

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Our son Kayden was diganosed at our 20 week ultrasound with a rare and complex Congential group of Heart Defects called Right Aterial Isomerism. He came into our word at 9:03am Feburary 2/09 by emergancy c-section. It was the happiest and scariest day of my life! After 18 days in the hospital, 1 scheduled surgery that was cancelled, 1 heart chatherization scheduled to place a stent in a narrow vein cancelled we took our beautiful baby boy home. To look at our son today you would never know he has heart problem and you would never know he once was give 2 months to live. He is a happy and active little boy always smiling. His 1st birthday is comming up soon and somedays we did not think he would reach this milestone but my little hero has. Kayden will always be my little hero and has gone through a lot in his short life and has gone through it like a champ. We will always treasure the photos we recived and appericate the session so much. I am sure when Kayden is older and knows all about this he will appericate it to.

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Trip was born 4 weeks early in April 2008. He had unexpected complications and came out not breathing and was sent to NICU, after a rocky NICU ride we got him home. He is now 21 months old and suffers from Reactive Airway Disease, Seizures, Eosinophilic Esophagitis, he has also been considered Failure to Thrive, and suffers from Developmental Delays. He attends Occupational Therapy for Sensory Problems, and attends a school 5 days a week for Autistic and At Risk Autistic Children where he receives one on one therapy, at home therapy, group interaction, speech therapy, and occupational care. He has come so far in the last 4 months and we definitely know he is a miracle to us and can overcome anything!!

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I am Noah – a fun, loving, sweet 3 year old boy getting ready for my 4th B-Day in January, 2010. My journey of doctors, MRIs, exams and therapies has been pretty intense, but with each visit my family and I have something more to be thankful for. I wore a helmet to reshape my head, hand splints for my thumbs, braces for my feet, and have endured endless needles for testing. I have also gone from visiting the doctors once every three months to once a year. I currently participate in speech, physical, sign, and occupational therapy. Although I cannot talk to you using my voiced words regularly, I can communcate by using signs and I am becoming quite versed in sign langauge. Our sons bring joy each and every day and Noah thrills us in all that he does and tries. He is so innocent and happy and keeps our hopes high with all that he will do one day! We truly learn something new each day and are so very blessed to have Noah in our lives. We know that one day we will all be angels with God, but for now, we have our very own little angel with us each and every day!

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Jozlynn was born with major congenital heart defects, hypoplastic right heart syndrome. She only had a single ventricle as well as missing two of her valves(basically half a heart). Needless to say her fight for life started on the very day she was born. She had open heart surgery when she was only 2 days old with a very small chance that she would make it through. Jozlynn is now 5 years old. She has endured hundreds of needles, tubes, wires, and machines. She has spent countless hours fighting for life in the ICU. She has been through 5 heart surgeries, as well as many other surgeries and procedures. We are glad to say that Jozlynn is now a very happy, active little girl. She can light up a room and capture everyone’s attention by her amazing, sweet personality. She loves to go swimming and go to preschool. She can just about keep up with all of the other kids. In fact, most people can’t even tell there was ever anything wrong with her unless they see her scars. If you ask Jozlynn about her heart surgeries, she’ll tell you that the doctor got to see her heart and said she has the most beautiful heart he has ever seen! She still has a long road ahead of her with more surgeries, infusions, tests, etc., but we are thankful for every moment we have with our little hero.

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This is Shea. Shea was diagnosed with Hodgkin’s Lymphoma, a blood cancer, in August 2008, just days before her first day of high school. She spent the first half of her freshman year undergoing five rounds of chemotherapy and three weeks of radiation. Ordinarily, Hodgkin’s is highly curable, but in Shea’s case, achieving remission proved difficult. She began showing symptoms again in May and was found to have relapsed in June, 2009. Since that time, she has had three different chemo regiments, some as an inpatient, some as an outpatient. It is hoped that an eventual dual stem cell transplant will eradicate her disease once and for all. In the meantime, Shea makes the most of her free time between treatments, attending school, hanging out with friends, seeing movies, and enjoying music and video games, much like any normal teenager!

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This is Sean. He is 9 years old and has austism. Sean’s challenges started early but we didn’t recognize them as signs of autism. He was adopted from Korea at age 4 months and we thought we were seeing signs of an expected delay in development due to all the changes that had happened to him in such a short amount of time. By 6 months of age he wasn’t responding to his name or our voices. He looked down most of the time and many people believed that he might have hearing problems. Despite years of therapies and medical treatment, Sean can not speak now. He does not use sign language or pictures with any consistency or efficiency. He is totally dependent upon others to figure out what he needs. His life has been very hard and frustrating yet he has been and continues to be a very sweet, gentle boy. He loves and shows it the best he can. He will never live on his own, never have friends or family as most of us know them. But he is my son and I love him with all my heart and always will. His brother and I are proud that he is ours.’

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In 2006 we found out we had been exposed to carbon monoxide as our flue had not been connected correctly, this was fixed but unfortunately not properly and in May 2009 our carbon monoxide detector went off and we found out we had been poisoned continuously for 6 years – during this time I had been pregnant and had Ellie (who is now 2). Consequently all of us as a family have had starvation of oxygen to our major organs including the brain and now have significant brain damage. As Josh and Ellies brains are still developing we wont know the full extent of the damage until they are 18 and every year they need assessing to see how their brains are developing and if they have deteriorated. Carbon monoxide poisoning affects the short term memory, concentration and retaining information – all things needed for education and life – Josh cannot learn new things as his memory doesnt register the information, on top of this he has dyspraxia which just accentuates the problem further. He has lost a third of his intellectual capacity through the poisoning which has caused self esteem issues. The poisoning has also affected our sleep patterns and for the past 18 months bedtime has been midnight for us all as the wiring of our brains is different now. Carbon Monoxide poisoning affects moods, personality, behaviour, social skills which we all have to try to deal with on a daily basis – life has changed dramatically and every day is a challenge, we have no idea what the future holds – but I thank God that we are all still alive x Josh and Ellie are truly heroes.

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Say Hello to Hayden! He is 3 years old and has Angelman Syndrome. Hayden likes to smile and puts everything in his mouth. Active little guy but unable to stand on his own and does a commando crawl to get around. Hayden likes new toys, shiny things, fans blowing on his face. Hayden can sit up on his own well. He likes to interact with people, but is easily distracted. He doesn’t give prolonged eye contact usually. I think he will be interested in just being in a new place, but we will try to bring some stuf he may respond to as well. He loves to be thrown around as well. Even with all of his challenges and restrictions Hayden is more then happy to live life to it’s fullest!

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Below are some of heroes we met in 2009

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This is Emily Lauren Archon. She came into this world the same way she loves to live. Unscripted and with flair. We scheduled a cesarean section, but she had another idea and came one day early. So much for planning. We looked her over from head to toe and decided that she looked perfect! The pediatrician came in the next day and told us that he saw several indicators that she had Down syndrome. It was heart wrenching to hear those six words, “your daughter may have Down syndrome”. She has touched so many lives and proven so many people wrong. Emily was born with a significant VSD and due to her small size, the doctors felt it was the reason she failed to grow and even suggested that she may need open heart surgery. She has never had the surgery and continues to improve in spite of it. Emily is petite, but her love is endless. Her compassion and caring immense. She may be 5 ½ years old and weigh a mere 29lbs, but she is large in so many other ways. Emily’s laughter is music to our ears. She brings smiles to our faces and joy to our hearts. She breaks barriers at every opportunity. She is our hero.

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Hi, my name is Olivia.  I am one year old and I have Cystic Fibrosis.  I spent my first 12 days in NICU for a meconium ileus which was able to be corrected without surgery.  I was diagnosed at one month after a sweat test.  I meet with my CF Care Team once a month to keep me wonderful, happy and healthy (and I am gloriously all three). I take 26 pills a day, a liquid vitamin supplement and have 4 breathing treatments followed by chest percussion therapy that I two two times a day.  I have had two bronchoscopies this year each followed by two weeks of IV antibiotics that my parents give me at home.  I have amazing parents that love me so much and I love them!  I am a warrior and I will beat Cystic Fibrosis.
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My name is Mateo and I am four years old! I have been battling with physical and learning disabilities since I was born. This has not stopped me from enjoying my family, friends , and my latest obsession: superheroes! I am continually showing off my Spiderman moves. My parents have worked tirelessly so I can talk, walk and run just like my friends. Maybe someday you will find me climbing a building just like Spiderman!

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Meet Chelsea, she has Wilms’ Tumor. Wilms’ is a childhood kidney cancer that usually shows up around 2-3 years old and begins with unmature kidney cells that grow out of control. Chelsea has a large tumor mass on her right kidney that surrounds her vena cava. It was the size of a nerf football. Chelsea has been through numerous treatments and procedures but through it all has been such a trooper. Her spirit and her determination to fight her cancer has kept herself and her entire family fighting through all this time! Recently Chelsea reached the end of her battle and now is a beautiful angel. Even though she is not with us in person her spirit and determination live on! She really is a hero.

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Zion is our Littlest Hero in so many way.  My hero has shown me courage and bravery that goes beyond your local comic book hero.  He has endure countless hospital stays to the point where we are familiar with most of the hospital staff. Zion was born with spina bifida he is trached and was tubed fed for the first year of his life. We just left the hospital in December due to an emergency operation that he required.  We were just there in October for a previous emergency operation.  My Littlest Hero is Zion Rangel, he is 6yrs old and a full time wheeler.  He loves to wrestle, make silly faces, and play video games.  He dislikes veggies, dark rooms, and clowns.  He has to take medication, therapy and doctors orders.  My Littlest Hero is my joy, my life, my son.

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At just twenty-one months of age, our little hero Kayla was presenting with flu like symptoms in June of 2008 for a few months. After receiving an MRI on June 23, 2008 it was obvious that Kayla had a large brain tumor in the right frontal portion of her brain. They were only able to safely resect twenty percent of the tumor.  She has been an inspirational fighter throughout her treatment here at St.Jude. Kayla has endured six rounds of chemo and another Craniotomy within these last four months. Each time she has bounced back full of spirit, and even though she is only two years old now it seems that she understands the task at hand and through it all she has stayed positive even through the pain and tears she has found a way to bring us sunshine through the rain. UPDATE: Kayla has earned her beautiful angel wings!

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Meet this Handsome Angel!! Frankie was Born 03-14-2007 and was Diagnosed at birth with Rubsintein-Taybi Syndrome (RTS) a Rare Genetic Disorder. Even with his doctor visits and everything this little guy must endure his family has high hopes for this little man. He is always smiling and also bringing smiles to those who meet him. He is a strong little guy with a bright future ahead of him despite his challenges!

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Ella was diagnosed with Diffused Intrinsic Pontine Glioma (DIPG) a rare brain tumor on 12/7/07. Ella was diagnosed with DIPG on Friday December 7, 2007. With Ella’s strong will, enthusiastic personality and bright light we know she will come through this storm in life. Ella is 7 years old! She loves to read, dance, sing and have fun!!! She has the biggest heart in the world. She has spent the last few days trying to make sure that mom and dad don’t cry. Ella wants to be teacher when she grows up. Ella is like most 7 yr old girls. When Ella was born she brought John and I HOPE. Hope for the family we had always dreamed of after her sister was stillborn at 38 weeks. We will continue to have that HOPE today, tomorrow and EVERYDAY!!! She is truly a gift! (UPDATE: Ella has earned her angel wings and is flying high!)
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When Isabella was born, she weighed just 4 lbs. Her medical diagnosis include esophageal atresia, PDA, ASD, and VSD heart defects, epilepsy, mild hearing loss bilaterally, Celiac disease, and severe oral aversion with g-tube dependence. She has endured 6 major surgeries, including open heart surgery, as well as 9 minor procedures. She has spent over 150 days in the hospital during her lifetime and she has over 20 scars on her tiny body to attest to her struggle. Even with all Isabella must endure her smile never fades away!
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Meet warrior Luke. He had bone cancer and had received a bone marrow transplant from his younger brother and is now in remission, I think the day was pretty overwhelming for him and he didn’t much feel like getting his photo taken (I think he was really just beyond ready to get out of the hospital and who could blame him!!) but they were still able toe sneak in a couple! Luke is mischievous, joyful, brave, intelligent, loving, honest, athletic, outgoing, creative, sensitive, hilarious, thoughtful, hard-working, full of life, artistic, and Godly. Luke loves the Lord very much. He asked Jesus into his heart when he wa four years old. Luke is faithful to pray about things that are on his mind, and he always enjoys reading the Bible. Luke loves to perform his own worship songs. He works to live in a way that makes Jesus happy.
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Allissa is 15 years old and has been diagnosed with Elhers Danlos Syndrome. This is a connective tissue disease that allows your skin, muscles and other connective tissues to be too stretchy/wobbly. This has caused her Odontoid Bone to retroflex backwards into her brain stem and has also caused her to have Cervical Cranial Instability. It has allowed her skull to push downward onto her neck because her neck is too weak to hold it up. It has also squashed her pituitary gland in half and decreased her cerebral spinal fluid in her skull. She does not let her illness drown her hope though. Alissa continues to show everyone around her how to live even against all odds!
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Meet Ben.  He is one cool person.  He is all-boy and has a great sarcastic sense of humor.  (He and I got along pretty well, hahah!) He has an amazing mom, April, and a super adorable sister,  Sydney,  who fight right along side him everyday at St. Jude’s Research Hospital. Ben has a brain cancer called non-germinomatous germ cell tumor, and was diagnosed this summer.  He just finished chemotherapy and thanks to his mad cancer-fighting ninja skills, he has avoided surgery and is now undergoing radiation treatment.
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Hi there! My name is Macy and I was born with an airway the size of a pinhole, yet breathing on my own. Thankfully it was discovered during a routine hernia surgery. Due to that, I had to have a trach for 16 months. I was born with a heart defect known as Tetrology of Fallot that has required 2 heart surgeries. I was also born with a liver defect (an absent portal vein), that was not discovered until I was 2 that will most likely require a transplant later in life. I have now been diagnosed with an unknown muscle disease that is probably a genetic disorder which is affecting my heart, liver, and muscles. I am very strong and determined. I must get that from all the special people in my life!
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Gregory was diagnosed with Juvenile Myelomonocytic Leukemia (JMML).  Monday February 23, 2009.  The day our world changed, forever.  His only treatment option is a Bone Marrow Transplant.  We are currently awaiting an unrelated donor match.  Gregory’s siblings are not a match.  For the time being, it’s about keeping him healthy and waiting for that magic phone call, telling us we have a match!
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Meet our beautiful Julia. We knew at our 20 week ultrasound that something was not developing right with our precious daughter. She was diagnosed with a rare chromosome disorder at 8 weeks old. She developed epilepsy,infantile spasms at six months and for the next 12 months we tried several different drugs to get her seizures under control. e do not know how many days we will have with her doing this well, so we try to value every moment. Julia is a little trooper – despite having cortical blindness and extensive developmental delays, she laughs and smiles throughout each day, reminding us to keep smiling for the gift we have received in her.
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Meet this speical little blue eyed warrior! Eli was diagnosed with leukemia just one week after his 2nd birthday.  With the amazing spirit that only a child can have, he is fighting through the tests and chemo, adapting quickly to his new routine.  Anyone who meets this little guy is instantly in awe and is inspired by Eli’s strength and will to live!
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Kate was born with Pierre Robin Sequence. Never heard of it? Join the legions of parents who were suprised by the birth of a PRS baby. PRS is the name given to a group of 3 markers: micrognathia (small and recessed jaw) , cleft palate & glossoptosis (larger tongue). Sometimes it’s part of a syndrome. Sometimes it’s considered isolated. In all cases, it presents a challenge for parents that most were not at all prepared for. Kate continues to smile through all her trials and always finds a way to be a light even in the darkness!
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Our beautiful daughter Mylee was diagnosed with Chiari type I Malformation at 5 months old. This is a malformation affecting the lower portion of her brain. Mylee also battles severe dysphagia and currently is tube fed only! Mylee will soon undergo Vital Stimulation to hopefully correct her dysphagia. She battles aspiration issues daily but even thorough her stuggles you can always find Mylee playing and laughing and just being a kid!
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Leo was born by stat-csection in his 35th week due to a heart rate of 290 (SVT).  After an 8-day NICU stay, Leo was discharged with only a cardiologist.  Around 4 months of age, we noticed Leo wasn’t making eye contact when he should be.  We were referred to eye doctors and then neurologists.  After an MRI, we discovered Leo must have had a prenatal stroke which caused 2 large cysts on his brain in the occipital-parietal region.  Due to this damage, Leo has microcephaly, developmental delays, he’s legally blind, and has hypotonia which seems to resemble CP, yet there is no definitive diagnosis for that yet.  We also learned along the way that Leo has 3 congenital heart defects and Hypertrophic Cardiomyopathy which is stable using medication. Despite these issues, Leo turned 1 in March of ’09 and he’s an extremely lovable little boy!
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Meet Emma. She is a Little Hero who is full of life! She was diagnosed with ALL- Acute Lymphocytic Leukemia. It originates in the blast cells in bone marrow, thymus, and lymphnodes. In January 2008, Emma’s mom took her to the doctor for hip pain and she was diagnosed then and began treatment the next day. She is now in the maintenance stage and even helps her mom to remember her chemo!!! Emma is full of life. Although she has been through so much, she has not let it get her down! We could learn a lot from this Little Hero!
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Joshua was diagnosed with a cancerous PNET/Medulloblastoma brain tumor in April of 2004. He was 20 months old at the time of diagnosis. He had 5 rounds of chemo, 1 per month through September of 2004. In October of 2004, he had high dose chemo with a stem cell rescue. He was in the hospital until December, and then in isolation at home until February of 2005. He is now almost 5 years out from the original diagnosis. Joshua did really well through treatment. He was really the poster child for “how well” chemo and transplant can go. All of his side effects were minimal. The worst ones were the mouth sores he got during the standard rounds of chemo. He is now 6 years old. He has no deficits from the treatment, and if it weren’t for the scar down the back of his head, you would never guess he had ever had anything wrong with him.
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Kings 15:14 says that “Asa’s heart was perfect with God’s for all of his days”, that is our wish for our son.  At 20 weeks pregnant, when we learned our baby had spina bifida, we decided that he needed a STRONG name. Asa was diagnosed with spina bifida, hydrocephaly and Chiari II malformation. Amazingly, he is learning to walk with the assistance of leg braces and a walker. Asa had some setbacks in 2008 with multiple femur fractures throughout the year but he continues to  shine and bless everyone he comes in contact with.  Asa is a shining light in a dark world.  As a family, he is a hero to all of us.
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Miguel Sanchez is a very brave 11 year old boy fighting Ewing’s Sarcoma. (cancer) like a pro! Even though Miguel has to endure grueling treatments and hard hospital visit’s he is not unlike any other 11 year old you might meet! He love’s to be play video games and spend time with his family and friends. Cancer is just a small road bump in this young mans life, and with his smile and his wit he should be driving right over it with ease!
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Meet our warrior princess!  Baby Alexa was given this name by the NICU staff as she demonstrated from birth to be a very strong and feisty little girl.  This characteristic would serve her well to face the journey ahead.  Alexa was diagnosed with three Congenital Heart Defects (CHD) while still in her mothers womb.  She spent the first month of her life in the NICU/PICU fighting for her life. With her condition, she will continue to require periodic open heart surgeries through out her life as the conduit they place in her heart will not grow along with her. She has taught her family much about courage and strength and having a positive disposition in the face adversity.  She is now 7 months old and growing like a weed and reaching all her developmental milestones!
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Meet Jarvis! He was diagnosed with Bilateral Wilms’ Tumor at 18 mos. of age after 6 months of chemo he had partial nephrectomy of his right kidney leaving only 45% and with additional 6 months of chemo he was diagnosed with Nephroblastomatosis. The tumor has continued to shrink but the location of the tumor is in the middle of the kidney, chances are the kidney will be removed and he will possibly on dyalisis for a couple of years and transplant after 2-3 of being clear of cancer. Even with everything he has gone through, Jarvis still takes on life with hope and with his loving family right beside him!
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Say hello to Jordan! Jordan has something called CP or Cerebral Palsy. CP is a group of disorders that affect a child’s ability to move and to maintain balance and posture. There is no cure for cerebral palsy, but treatment can improve the lives of children like Jordan who suffer from it. Treatment includes medicines, braces, and physical, occupational and speech therapy and a lot of support and love!
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Miss Addy is an almost 2 year old with a giant heart and even more courage.  Addy has been diagnosed with with Arthrogryposis Multiplex Congenita. It’s a rare congenital disorder that causes multiple joint contractures and muscle weakness.  She’s been through so much and still has such a great attitude and personality.  She’s a fighter! She is loved by all that meet her and I was immediately smitten!  Her dream is to meet Dora one day!  She would love to tell other children who have been diagnosed with AMC, to keep fighting, stay strong and keep smiling
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Meet Mackenzie! Within 12 hours of birth, she began vomiting and after MANY tests, it was found that she had a bowel obstruction.  This lead to her first surgery before she was 24 hours old. Eventually, she was diagnosed with Hirschsprurg’s Disease — she had no nerve cells in her intestines and therefor could not more or absorb nutrients.  Her first year of life was full of illness and surgeries — and she started to develop liver failure at 10 months old.  She was eventually listed for a Small Bowl Transplant.  Her mother got the call for her transplant on April 29th, 2003,  an 8 year old boy who passed from a stroke. She has had horrible bouts with rejection and illness, but now is able to act much like a normal 7 year old — playing soft ball, attending the first grade, and riding her 4 wheeler!
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Hi, I’m Carson!  I am 3 yrs old and I have Chiari Malformation and Craniosynostosis. My older sister, Riley, and my older brother, Keegan, both have chiari as well. I am a twin and a preemie. I was born via c-section at 31 week and spent 26 days in the NICU. After I came home, my mom had noticed that my head was not growing correctly. We went to the doctor and we had a CT done. At 4 months I was diagnosed with early fusion of the skull bones. I have had many MRI’s, CT’s, spinal taps, but have not needed a chiari decompression yet.
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Meet Lynzee, she has Neurofibromatosis(NF for short) There is NO CURE. NF causes painful tumor growth on nerve endings, organs or anywhere on the body. Lynzee is currently on a , Zofran, Seizures meds, Asthma meds, Allergy meds plus daily pain medication and addtional pain meds when needed. Lynzee has also been diagnosed with possible Osteoporosis. Despite all this Lynzee is a very brave and happy young lady that goes out of her way to help others. She will always be a hero!
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Meet beautiful Taylor Jones! She has recently been diagnosed with AML Leukemia and her and her family are getting ready to battle and conquer this cancer. She is a fighter and we’re about to witness her strength to the fullest extent. She always has a smile on and knows that she will beat this disease and come out of it a winner!
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Be sure to check back as we are rotating through stories so each child gets a chance to shine!