Our first child, Norah, was unexpectedly early at 32-weeks, weighing only 3 pounds. Shortly after her birth we found out that she had a condition called esophageal atresia (EA) with tracheo-esophageal fistula, a birth defect which occurs in approximately 1 out of 4,000 births. This meant that her esophagus was not connected to her stomach making it impossible for her to eat. Instead, part of her shortened esophagus was improperly attached to her trachea which would cause any fluids to aspirate into her premature lungs. She underwent her first surgery when she was only a day old. She spent 8-weeks in the NICU recovering from surgery as well as her prematurity. At the age of 6 months it was discovered that her first surgery turned out to be unsuccessful and her trachea and esophagus once again re-connected. She had to undergo an 8-hours surgery at a hospital across the country for this very difficult surgery. We spent 5-weeks recovering from this surgery which has proven to be successful thus far. We pray that she continues to thrive and eat with little difficulties. She has proved that she is indeed a little miracle in so many ways. We are so blessed to have her.
Meet beautiful Ayden! Ayden was diagnosed at 8 months with Neurofibromatosis (NF) and pseudoarthrosis of the tibia. NF is a genetic disorder that can cause tumors to grow anywhere inside or outside of the body. Ayden’s leg broke at 10 months due to Pseudoarthrosis and was braced until she was 3 at which time she had her leg amputated. Just recently she had to undergo surgery on her leg again because of some problems. She is a very energetic and lively child that has brought so much joy to our lives.
Naomi was diagnosed with complex Congenital Heart disease before she was born. Looking at her, one would never know how much she has had to endure in her short 18 months on this earth. On the outside, she is a picture of health and vibrancy. However, her life events depict another different story. At only 7 days old she was sent from the NICU to the Operating Room, where she would survive an extremely complicated, 7 hour open heart surgery. Miraculously, Naomi not only survived, but recovered incredibly quickly, astonishing NICU doctors and nurses. Naomi was sent home about a week after surgery and discontinued all medications by three months. The first surgery was supposed to fix her broken little heart for good. Her father and I learned when she was 2 months old that her heart was still no functioning as it should. Naomi returned to the Operating Room the following May, when she was 10 months old, for another open heart surgery. We thought her heart was finally “fixed” and we could celebrate her birthday, knowing life would get easier for her! However unfortunately, one month after her 1st birthday, it was determined that the second surgery was also unsuccessful, and that she would need a stent placed in her left pulmonary artery, via a cardiac catheterization. Naomi has been closely monitored her whole life, and obviously has a fear of anyone in a white lab coat! Besides that one fear, she is our brave little girl who makes everyone around her smile. She has a alluring personality and displays her sweet spirit with kisses and hugs for everyone every day. We love her.
Peyton James is a very happy five month old. It is hard to look at him and believe how much he has been through. Peyton was born with a congenital heart defect called Total Anomalous Pulmonary Venous Return. The veins that should take oxygen rich blood from the lungs to the left side of the heart actually went back to his right side. It is almost impossible to detect in utero because the body receives oxygen from the mother not from the lungs. He also had two holes in his heart. An Atrial Septal Defect and a Ventricular Septal Defect. The ASD was the only reason Peyton was able to survive outside the womb. It allowed blood from the right side to circulate into the left and out to the rest of his body. Peyton had open heart surgery at six weeks and one day old. He had to go on bypass twice. He had a difficult recovery. His kidneys were damaged from being on bypass so they needed extra time to heal. He also developed pseudomonas. Peyton’s immune system was already weak from his CHD and now he was trying to recover from open heart surgery and a deadly infection. But, our heart warrior fought and he pulled through. Exactly 10 days and six hours after surgery we got to hold our boy again. I saw him smile for the first time that day. He still has some challenges ahead, but he is a fighter and I know he was made to do great things.
Kendall was born a full term baby via repeat c-section with no known issues. Upon her birth, she was found to have a tracheoesophageal(TE) fistula. Upon her being taken into the nursery, she was also found to have an imperforated anus (IA). While waiting to be transported to Shands at UF, she apparently had a blue spell and a murmor was found. Upon arrival at Shands, Kendall was found to have Tetralogy of Fallot (TOF) with pulmonary atresia. Kendall underwent surgery to repair her TE fistula and her IA at 5 days old. She had open heart surgery at 26 days old. She will have many heart procedures to endure throughout her life. They have placed a conduit that will not grow with her as well as the pumlonary valve will have to be replaced. Prior to her leaving the hopsital, it was! also noted that she has an L4 anomaly as well as a duplicated collecting system in her right kidney with stage 2 kidney reflux. Kendall is a tremendous joy to everyone who knows her. She has touched more lives in her few months of being here on earth, than some people do in a lifetime. She is a trooper. She has had a long road up to now and has a long road ahead of her. She is strong, and I am so proud to call her my daughter.
Noelle was born on February 10, 2012, with two congenital heart defects. She has atrioventricular septal defect (AVSD), which means she has holes between her upper and lower chambers in her heart. These holes cause her oxygenated blood to mix with non-oxygenated before being pumped to the rest of her body. She also has coarctation of the aorta, which is a narrowing of the aorta which causes blockage to blood flow. At five days old she had open-heart surgery to correct her coarctation of the aorta. Noelle’s surgery was a success and she spent two-and-a-half weeks in the hospital for her recovering. Right before we were scheduled to go home, Noelle got necrotizing enterocolitis (NEC), which is an infection and inflammation that causes destruction of the bowel. She could not eat for two weeks and was put on antibiotics and nutrition through an IV. She spent three-and-a-half weeks in the hospital recovering. Noelle is now home growing and spending time with her family. She is still learning how to do the normal baby things like taking a bottle. Right now she is being fed through a feeding tube until she can take a full bottle. She will need a second surgery to correct her AVSD, which her cardiologist is planning to have in September.
Rachel is my miracle baby. When she was born we were told that she had Proteus Syndrome and that she wouldn’t see her first birthday. Little did these doctors know who they were dealing with! Rachel decided to not only prove the doctors wrong but to beat the odds and will be three in February. She is our fun loving, structured and happy little girl. It amazed us that with everything she’s been through that she’s so loving to her brother & little sister. Her right leg is longer then her left so it has a limp when she walks. Her right leg swells up anywhere between 2 to 4 times the size of her left leg and causes her pain when this happens. Her right arm & hand has recently started to get bigger then her left. Her neurosurgeon found a Chiari Malformation on a MRI this ! past February. We are going to his office on July 18th to schedule surgery to “fix” it. Since her birth Rachel has had 8 MRI’s. She see’s her doctor every month and see’s at least one specialist (genetics, neurosurgeon and eye doctor) at least once every other month.
Our little warrior Cael was diagnosed with a broken heart at a 20 weeks during routine ultrasound. We found out that Cael had congenital heart disease (various problems with his heart, but ultimately a rare disease called Hypoplastic Left Heart Syndrome). Despite the severity of the many defects, Cael outlived the doctors’ expectations and continued to fight in his mommy’s belly! He was born on March 31, 2012. Immediately after birth he underwent his first of many heart procedures. At five days of age, he had his first of at least three open heart surgeries. Cael’s surgery went very well, but his heart was having a difficult time adapting to its new anatomy shortly after surgery. He went into cardiac arrest and required life support to aid his troubled heart. After weeks ! of riding the roller coaster of ups and downs, Cael was able to recover from the procedure and come home before his next surgery. He is now 6 weeks old and is working hard to learn how to eat and gain weight before his next surgery (around 3-4 months of age). Our heart hero certainly steals a piece of our hearts as we fight to keep his beating.
Isn’t it ironic that the best day of your life can be followed by the worst day you’ve ever had? Unfortunately, that is what happened to my husband and I. It all began on May 7th, 2006 when we welcomed a beautiful baby girl named Alexis Nicole into this world. Being a first time mom, when I questioned why she didn’t come out kicking and screaming, i was told that it was fine. When I questioned why she slept a lot I was told that was normal. When I questioned why she didn’t want to eat, I was told that I didn’t know how to do it right. When I questioned why her finger and toes nails were blue, I was told it was no big deal. Well, apparently she wasn’t fine. As my husband and I were getting ready to take our baby home, a nurse came in the room and said Alexis looked a little pa! le and that she wanted to check her out. Next thing I knew the nurse walked back in my room, without my baby. She told me that her oxygen level was dangerously low and that she needed to be transfered to another hosptial by ambulance. They hooked her up to a breathing machine and took her away. When we got to the second hospital we met with her cardiologist who told us she has hypoplastic left heart syndrome. He told us there were three options for our little girl. We could wait for a new heart, which he said is very hard to find, take her home and let her die, or go with a three step surgery that. We decided option three would be the best for her, and hoped we made the right decision. The next morning she was air lifted to another hospital where she had her first open heart surgery at five days old. She was in the hospital for a month and when we got home we had a month of monitors, doctors appointments, learning how to give her all of her medicines, and how to feed her wi! th her feeding tube (this was her only means of eating until s! he was e ighteen months old). Then after being home for that short time, she was not doing well, so at three months of age she had her second open heart surgery. As before, she was in the hospital far from home for another month. Luckily she was home for a few years before it was time for surgery number three. At three years old she had her third surgery which she bounced back from very fast and was able to come home in two weeks. A year went by and she did great! However, shortly after we were back again so that she could have a stint put in that lasts three to five years. Although Alexis will never be “fixed” and there will always be daily medicine, restrictions, doctors, and more procedures and surgeries, she’s the picture of happiness! She is now five, just started kindergarten and loves to dance, swim, play outside, and anything else a five year old loves to do. We enjoy each day with our child, not knowing what tomorrow may bring. We are so lucky that we are able to be parents to such an amazing and special child. Alexis is my strength, my inspiration, but most of all she is my hero!!
Meet Angelnia! My daughter is a gift from God. As my pregnancy went on my sweet baby was not growing. Finally at 37 weeks I was induced a week before Christmas. What a gift my daughter is. She weighed in at 4lbs 13 oz. After numerous doctors, slow weight gain, and Lina not meeting her milestones, and a blood test from her neurologist she was diagnosed with Chromosome 10 deletion. A rare genetic disease. This diesase affects her vision, weight , height, and development delays. Linas is now a happy, sweet, active 3 year old . She is in Special Education preschool, and recieves occpational Therapy, Physical Therapy,and Vision Therapy. Everyday her strength inspires me and I thank God I was blessed with my Christmas gift on that winter day in December.
This is the story of how Zeke became my life. Feb 22, 2011 I found out I was 22 weeks pregnant. Two weeks later I found out I was having a boy! I was so excited! I worked up until three days before I delivered. I was contracting at a Fourth of July party and the next day I knew it was time. He was full term. I had to go in for an emergency C-section. I then found out that he had some issues. I first noticed his skin tags around his jaw and ear. The doctors then told me he was missing his entire right ear. Then I saw his jaw was extremely underdeveloped. This is called Goldenhar. I was sad, mad, and confused. I didn’t know what I had done to make this happen. I was afraid I wasn’t going to be able to handle this and that baby deserved a mom that was perfect. It wasn’t long before I knew I was meant to be his “perfect” mom. He had several tests. We learned that his left “normal” ear had normal hearing and just mild loss on his right. It was a miracle. He had no ear! He can’t feed orally but he wants to. His chin is too small and it tires him out to try. He has a long road ahead of him and there’s no doubt that he will be amazing. We met with a plastic surgeon and he decided that jaw surgery is the way to go. Through it all he is happy and strong, and such an inspiration!
Darla Jane was diagnosed the day after she was born with hypoplastic left heart syndrome. The left side of her heart was not developed in utero. Darla Jane had her first open heart surgery at 11 days old. She spent her first month of life in the hospital and then was able to go home to be with her mom, dad, two sisters and her brother. She will have her second of a three stage open heart surgery process soon. It is normally done between 4-6 months of age. She made a strong recovery from her first surgery and we pray she will do the same this time and the next! Darla Jane is definitly our hero!
August 20, 2009 is the day our lives changed forever. It is the day that the doctors told us that our unborn son had a complex congenital heart defect. On December 4, 2009 a small, 4lbs 12 oz, boy entered our family…and his tiny heart was already failing him. We named him Kaiden because it meant warrior and that’s exactly what he is. Kaiden’s defects were severe and included Tetralolgy of Fallot with a restrictive VSD, pulmonary atresia, and an aneurysmal PFO. When Kaiden was five days old, our world stood still as a skilled surgeon stopped his beating heart and mended it. Our small, but mighty boy fought the next 5 days to recover from renal failure caused by the surgery and 6 days after that he was discharged from the hospital and finally came home to meet his older brother and reunite with his twin sister. Kaiden has struggled developmentally over the past two years, but recently was discharged from this special education program. His cardiologist anticipates Kaiden to require an second surgery when he reaches 4 years old, but multiple surgeries are common with his heart defects. One cannot help but fall in love with those bright blue eyes, gorgeous dimples, and infectious smile. Kaiden is a Hero, a Warrior, and a True Blessing for our entire family.
Aleria was diagnosed with spina bifida in utero. She has endured 12 surgeries, countless physical therapy, occupational therapy, and aquatic therapy sessions. She is constantly going to the doctor and yet she is one of the happiest and funniest little girls I have ever met. We were told that Aleria wouldn’t walk because of her level of spina bifida. However, I’m proud to report she is walking with the help of her walker. She is a true inspiration to anyone who meets her!
Sullivan started having rapid and intense seizures within 24 hours of being born. He spent the first 2 weeks of his life in the Vanderbilt NICU while they tried to get the seizures under control. The doctors told us they could not tell us what kind of life Sullivan would have due to the damage the seizures in the first 3 days of his life had caused, but we went home hopeful that our beautiful little boy would be just fine. Within weeks of being discharged the seizures started becoming more frequent again. Sullivan’s medications was increased and once again life was “normal” .. except something didn’t seem right about his head. It was very elongated and the changes in positioning suggested by his PCP and physical therapist were doing nothing to change it. By the time! Sullivan was 2 months old there was a visible and tangible ridge running the length of his head. When he was 3 months old he was diagnosed with craniosynostosis which is a big word that means the soft spots in his skull had closed prematurely and were causing restricted growth of his brain and skull. Surgery was our only answer. Sullivan had a cranial facial reconstruction surgery at 5 months old. He is now 8 months old and doing great. His seizures are under control and he is healing great from his surgery. He has a few minor developmental delays but his prognosis at this point is very positive. He is silly and wonderful and we are thankful for him each and every day!
Brynn Ann was born July 27,2011 with a congential heart defect commo,aly know as hypoplastic right heart. Her right side of her heart wasn’t developed properaly it was smaller than it should be. We knew about it before she was born so we had her at a hospital known for his children cardio department and she had surgery when she was a week old. And another one a week later. She spent the first 3 weeks of her life not being able to be held just laying in a hospital bed. She is expected to have the hemi fontan procedure which babicly shuts down the right chamber that she does currently have. They do that in two steps and she is expected to hve the first one on Jan 18th. She is a fighter and brings us all such joy and has shown us so much. She has an 8 year old older sister who can not wait to get to play with her and teach her so much.
Allison was diagnosed with a Congenital Diaphragmatic Hernia (CDH – see cdhsupport.org for more info) as a 20 week fetus. She was given a 50% chance of making it through pregnancy. At birth she was immediately swept away and hooked up to life support. She arrived 6 weeks too early. After 5 days of believing she was not going to make it, she was stable enough for surgery. They put in a gortex patch to act as her diaphragm and put all her insides back where they belong. They found that she was only able to develop half of one lung as a fetus. She was in intensive care for the first 2 months of her life learning to breathe, then finally to eat. In addition to Allison’s condition, she has 2 small wholes in her heart that we are praying will close by the time she is a year old. She also has severe protein allergies and reflux disease, which have caused her some serious eating troubles. Allison is now 13 months. She is doing amazing. The holes in her heart were found to have closed themselves at a 6 month Echo. She did an intense PT regimen for a few months to get her crawling and standing and now she is well on her way to walking – taking about 5 steps at a time all on her own and cruising all over the place! She still deals with some reflux and feeding issues and is still small for her age but we are now down to only seeing a doctor for standard well baby exams with an occasional visit from an ST to work on getting her eating more. She is doing absolutely amazing and is doing some baby modeling in hopes to spread more CDH awareness.
Meet Elise, the strongest diabetes hero we know! She was diagnosed at only 12 months. She has never known a life other than finger pokes, shots, highs, lows, CGMs, and pump changes. “Eat now. Eat this. You can’t eat right now.” but she seldom complains. When she does, I know it’s time to listen. She’s only 4 and we often forget that. She is more mature than some adults I know. She has the biggest heart. I haven’t been feeling well this week and yesterday she came up to me, started rubbing my back, telling she wants to take good care of me, just like I do for her. She is Elise; my hero. My daughter. My blessing. How did I get so lucky?
In April 2010, Josie was born 8 weeks premature via emergency c-section on the day it was found she had hydrops fetalis. She was given a less than 5% chance of survival, but after spending 3 very up and down months in the NICU’s at Huntsville Hospital and Vanderbilt Children’s she was able to come home medication and oxygen free. Once home, she adjusted wonderfully but gross and fine motor delays became more and more apparent. In May 2011, she was diagnosed with periventricular leukomalacia, or areas of brain death. Her cerebral palsy causes her to be unable to hold her head up very long and have little trunk control. She is working so hard in multiple therapies and is getting stronger. She is such a blessing to our family, we are so thankful she is with us.
At my 20 week ultra sound we detected my baby to have a small cerebellum section of her brain. At that time we were told that she likely had Dandy Walker Syndrome. We were given a grim prognosis before she was born. We were told she would seize daily and have possible fluid on the brain. They did not expect for her to smile, laugh or walk. I was induced for C section due to a failure to thrive while I was pregnant at 38 weeks. Sophie Mira was born April 21, 2010, weighing in at 3lbs 3oz being only 2 weeks early. After genetic testing it was determined that she actually had 2 chromosome disorders. The first and less severe disorder was Turners Syndrome, which causes short stature and infertility in most cases. The second was Trisomy 10, which means instead of two chromosome 10’s my daughter has 3. Tri10 has created a hole in her heart which will require open heart this summer to repair. Recently we found out she has scoliosis. and there are plans to straighten her legs which will require a number more surgeries. Due to the failure to thrive and her heart condition she needed surgery in order to come home from the hospital after a couple months in the NICU. A G-tube was placed to ensure feedings would be achieved and she could grow and gain weight for a heart surgery. She has had 2 hospitalizations in the past couple years for pneumonia and has respiratory infections often due to the heart causing low immunity. Just recently I was blessed with the opportunity to stay home full time, and Sophie has excelled. She is smiling, laughing and started saying dada. We have had extensive home therapy programs and splinting of her hands and feet since birth . Her hands improved so much she only needs her feet splints now. Although it took Sophie a long time to grow she is now over 2 years old and 15 pounds. We are hopeful that this surgery will help her to grow even bigger, stronger and healthier. Because of Sophie and her story we have had life experiences and met lifelong friends I would not have met without her. I feel like she has been a blessing in so many ways to me already. I anticipate what else she has for me to learn through her life.
Kade James was born on Easter Sunday, March 27, 2005, and is 7 years old now. Only born about a week early there was no reason for concern. The birth did have some complications of his heart rate dropping. Later it was determined that it was due to the abnormally short umbilical cord. Kade was diagnosed with Translocation Mosaic Downs Syndrome when he turned one. This is a rare form of the disorder and in most cases can range in mild to severe delays. We were told that he would need many tests to check his heart, organs, eyes and ears. Thankfully he has been blessed with wonderful health. A hole in his heart repaired itself by his second birthday. He has perfect sight and hearing and all other tests have come up negative. The first signs of developmental delays were when he could not walk or crawl. After realizing he had relaxed muscle tone we knew this was likely due to a disability. Club feet require him to wear insoles in his shoes, and he receives Physical and Speech Therapy. Kade has not let DS affect his ability to do everything, and he keeps up with his two older brothers very well. Kade is also the proud and protective brother of two younger sisters which he loves and adores. He still has speech and language delays but knows sign language and is learning French as well. His favorite hobbies include fishing and horse therapy. We are excited that he will be advancing to First Grade in his mainstream school with his peers in the fall. Kade has changed our family and the entire outlook on life. We finally realize to appreciate the little things in life.”
Our son Jacob was born 10/01/1997, full term. It was not until his birth we realized something was wrong. Jacob was flown to ST.Mary’s in Rochester, MN, right after birth, where they discovered he had a very severe form of pulmonary atersia with several vsd’s and only 1 functioning lung. Shortly after Jacob was home he started shaking, it was disregarded by our doctors, until it became so severe that is was apparent Jacob was having seizures every 5-10 minutes. Jacob was put on a ambulance headed to Rochester again, about 1 hour into the trip the EMT’s realized Jacob may not live they couldn’t stop the seizures. They went to the closest hospital and had Jacob air lifted. It was at this point I knew Jacob had much more wrong than just a heart defect. We were terrified! of losing our only son. Once in Rochester they discovered the seizures were due to low calcium and that lead the doctors to believe this was Digeorge Syndrome. A FISH test proofed in fact Jacob did have Digeorge. Jacob has had a difficult life medically, but to meet him you would never know it – he has faith so deep it is unbelievable. He loves life and loves everyone around him with all his heart. At 6 months old Jacob had his first open heart surgery and at 2 he had what was to be a complete repair of pulmonary atersia. Unfortunately Jacob’s body didn’t take well to the repair. He is left with a heart that goes from rib cage to rib cage and only 1 functioning lung. The doctors say Jacob will not live past his teenage years. Jacob has recently been put on oxygen and is struggling with fluid retention issues from his heart condition. He is now in the end-stage cardiac failure, Jacob at the age of 3 went into shock because his adrenal glands shut down, his body stopped producing cortisol. He is now on replacement and will be for life. Life has been full of challenges for Jacob with speech, school, and physical activity, yet he seems to take it in stride. He is 14 years and 3 1/2 feet tall, just a adorable and amazing boy to know. As parents we count our blessings everyday and have learned how to truly live in the moment through Jacob. Jacob is the true picture of strength!
Our Jerrin was diagnosed with biliary atresia shortly after he was born last September. Jerrin was born with no bile ducts in his liver. At first he came home and was perfectly healthy. At about six weeks old he became very jaundice and was immediately admitted to Hershey Children’s Hospital (Hershey, PA). He underwent emergency surgery at nine weeks of life. They attached a piece of his small intestine to his liver to act as his bile ducts. While this is just a temporary fix we wouldn’t have it any other way. We know Jerrin will one day need a new liver but we are just living day by day with what we currently have. He is on three medicines three times a day and a special vitamin.
Lily is funny, artistic, loving, cheerful seven year old girl who has Acute Lymphoblastic Leukemia. Lily was diagnosed with acute lymphoblastic leukemia in late January 2010. She has endured numerous rounds of radiation and chemotherapy treatments, spinal taps and lumbar punctures to battle her cancer. She is vivacious and lovely and courageous and her parents are hoping upon hope that she will be able to survive this extremely trying time in her life. As you can imagine, caring for a child with cancer is daunting enough, but combined with financial difficulties, it can make the journey challenging at the best of times,” said family friend Cecilia Tement. Acute lymphoblastic leukemia is a cancer that starts in the stem cells of the bone marrow that make blood cells. Leukemia develops when the blood stem cells in the bone marrow make abnormal blood cells. Over time, leukemia cells crowd out normal blood cells making it hard for the white blood cells, red blood cells and platelets to do their job. Lily is always seeking adventures, loves to travel and explore and is compassionate and caring about others!
Breylon is a three year old little boy living with mitochondrial encephalomyopathy, an energy deficiency disease. Breylon struggles daily with seizures, dysphagia,severe gastroparesis, malabsorption, intestinal failure,low muscle tone, GERD, lung disease, sensory processing issues, cardiomegaly, neurogenic bladder, hearing loss, tracheamalacia, hypomyelination of his brain, peri-ventricular leukomalacia and an immunodeficiency. Breylon is cognitively impaired and non-verbal, however he can speak volumes with his beautiful smile! Due to Breylon’s significant gastro-intestinal issues, Breylon’s nutritional needs are meet through TPN running 24/7 through a broviac central line. In January of 2011, sweet Breylon was placed on pediatric early care hospice. He has endured multiple hospitalizations, countless tests, procedures and surgeries to date. This little guy has been through SO MUCH in his short 3 years of life, but no matter what he is always SMILING!
Kyndal was born in September, 2008. She has been our little miracle since the day she was born. After spending a month in the NICU we were finally able to take her home. She has been a blessing in our lives. Even though she has had many medical procedures and appointments she still remains a positive little 2 year that likes to test her mommy’s patience. At this time she is recuperating from her most recent surgery from a Port placement and a muscle biopsy for Mitochondrial Disease. Kyndal relies on a GJ tube for her feeds. She has very slow gastric motility and receives a medication that is no longer on the market to help.
Our daughter Mya was found when she was three months old, on a park bench in Luoyang, China. She was already fighting for her life. Upon admission to the hospital it was discovered that she had two large holes in her tiny heart (ASD/VSD) Through some volunteers and donors, our daughter received the life saving heart surgery that she desperately needed. Two years later, we met her in a Civil Affairs office in Henan, where we promised that we would love and care for her, and her broken heart. All that reamins of the holes that our little girl was born with is a six inch scar – that will forever serve as a reminder of the good fight that she fought and how amazing our God is.
Our oldest was right when he said I would be having a girl, but we never expected her to come 4 weeks early and have a heart defect. I had a normal, healthy pregnancy and was talking to my doctor about inducing 2 weeks early due to her size and the fact I have very fast labors. Little did we know little Lauren would make her own timeline! She might have been 4 weeks early and too fast for the doctor to get there, but she seemed to be a healthy baby coming in at 7.5 pounds. She was checked by the neonatologists and was given a clean bill of health. Later that day,however, the nurse mentioned he heard a murmur, but assured me that it was fine and that babies typically grew out of them. I heard that several more times that day and again when the doctor came the next morn! ing to take her for her exam. But when she came back she said she was having a cardiologist come by, just to make sure. She was terribly wrong. Lauren had critical aortic valve stenosis and a deformed aortic valve. She was rushed to another hospital and had a balloon valvuloplasty at four days old. She has been holding steady since that time, but we have recently learned that her valve is leaking too much to perform another balloon. She will have to have open heart surgery within the next couple of years. She faces several in her lifetime. Lauren is just an angel. She makes everyone smile and has smile that is contagious! She is incredible smart (too smart for her own good sometimes) and has such a caring spirit. She is my heart warrior!
We found out about Cooper’s condition at our anatomy scan at 20 week. We were told something was wrong with our baby’s brain and we would need to see a specialist. This was late on a Friday afternoon so we waited all weekend to see the specialist. Early Monday morning we traveled an hour and a half for an ultrasound where our son, who we named Cooper, was diagnosed with an encephalocele. We were encouraged to terminate but chose to carry Cooper and allow God’s plan to be carried out. Cooper Thomas Whitesides was born via c-section on March 17th, 2011. He weighed in at 10 pounds 2 oz and came into this world screaming and hungry! He had brain surgery to repair is encephalocele at 1 day old and was discharged from the NICU at 9 days old. We were told he would more than likely n! ot develop past infancy. Although he is developmentally delayed, he has surpassed all expectations for him. All of his doctors have described him as amazing! At 4 weeks old he started having seizures which were treated and controlled for almost 9 months. Recently, he has started having seizures again but we are working to get them controlled again. At 4.5 months old a large cyst was found in his brain and he has his second brain surgery on August 1st 2011 to place a shunt. He was diagnosed with Cortical Visual Impairement on August 31st, 2011. Cooper receives physical therapy, occupational therapy, play therapy, and vision therapy. He has been through so much but most of the time, he is happy and smiling. He is our hero and he has taught us so much about life. He is our miracle from God.
Liam was born at 28 week on 3/14/2010 due to eclampsia. After an initial rough start with something hardly ever found in preemies called Persistent Fetal Circulation (also called Persistent Pulmonary Hypertension of the Newborn – PPHN), especially when there’s no heart condition present, he did fairly well. He spent 74 days in the NICU and came home 5/27/2010, just 8 days before his due date on oxygen due to chronic lung disease. While he was delayed, he was developing at an appropriate pace and was on target for his adjusted age. He had several hospitalizations starting a month after he came home from the NICU for breathing issues but continued to develop and was the happiest baby ever. That all changed in January 2010 when, after a hospitalization for RSV, he began having what later came to be diagnosed as Infantile Spasms, a rare form of epilepsy. In the matter of a week, he went from being developmentally like an 8 month old to being like a brand new baby all over again. He even lost the ability to eat by mouth. He spent 12 weeks on ACTH injections which took care of the Infantile Spasms but left us with a severely delayed Liam. He had to have a G-tube placed for nutrition. Though the spasms haven’t returned, he now has several different types of seizures which have, to date, been uncontrollable. In addition, his breathing issues have not improved as they should’ve by now so he still uses oxygen frequently. Between the seizures and the respiratory issues, he has had 25 hospitalizations since coming home from the NICU, including in November when we nearly lost him following a routine surgery to remove his tonsils and adenoids. Though doctors think there is one underlying genetic condition causing all his issues, every test result continues to come back negative leaving us without answers to many questions. While he has been through a lot, Liam is one of the happiest babies/toddlers that you’ll ever meet and has brought so much joy to the lives of many people.
Hunter has been though so much I don’t even know where to begin. Hunter was never suppose to make it they told me I should abort the pregnancy because he would die right after delivery. Me being the hard headed Christian and mom that I am refused and kept going. Hunter was born on March 5 2011 weighing 1 pound 14 ounces, He was 32 weeks gestational. At birth he was diagnosised with a vsd, asd, pda , Heart disease, Lung disease and Five alpha ductace deficiency (his body doesn’t produce testosterone like he is suppose to.) After two months in the hospital at Forsyth we were told his Pda needed to be closed. They moved us to Brenner’s childrens Hospital and his pda was repaired witch in return made him worse he was never able to come off of the vent. At Brenner’s he caught a Klepsiella pneumonia infection that just about took his life he coded for 20 mins and finally came back to us. The code cause him to have brain damage but we just had no way of knowing how severe. At Eight months old and 10 pounds we discovered by echo that hunter had a vein disease called Pulmonary Vein Stenosis .(his veins between his heart and lungs get clogged with cells that keep growing. Blocking his veins that in return keeps oxygen from going to his lungs so he can’t breath. He had already lost one of his four pulmonary veins before we discovered this. There is no cure for pulmonary vein stenosis just a surgery that can help extend the process along with heart caths. We tired calling around to all of the hospitals in our area to see if anyone would do the surgery on Hunter and they all refused and said it was to risky so we widened our search and got him accepted to Boston Children’s Hospital after lots of convincing they agreed to just try but they couldn’t guarantee anything. After a 14 hour heart surgery Hunter was at his best playing and acting like his feisty self. He went through 4 heart caths after that trying to keep his veins open but the disease kept progressing we even tried a experimental Glevac medication to help slow the cells from growing back in his veins but had no success. Hunter Lost his Fight on Feb 24,2012 right before his 1st Birthday. It is really tough having to say goodbye to such a sweet little boy but I am thankful for the time we had with him it was the best 11 months of my life and we still cherish our memories with him.
Sean is our 2 yr old had a traumatic birth with the nuchal cord wrapped three times around his neck, a pneumothorax and he had to be resuscitated at birth since he came out blue and had to be whisked to the NICU and spent the next few days on a ventilator with a total two week stay in the NICU. He was a full term premie because by all appearances he stopped developing internally when I was hospitalized with H1N1 at 31 weeks but he was born at 38w5d. Due to the traumatic birth he didn’t use the right side of his body for the first six months of life. He was also born with a congenital heart defect called a Double Aortic Arch and he had heart surgery at 6 weeks old. He also has transient hypogammaglobulinemia of infancy and neutropenia which means we can’t take him out to the playground with a playgroup or go to church or the mall without risking him getting sick. He suffers from asthma, bronchomalacia, tracheomalacia, and central apnea. He has food allergies/FPIES/MSPI, severe reflux, bubble palate, aspiration, and delayed gastric emptying, which is why he has a feeding tube called a gastrostomy for over the past year. He was failure to thrive prior to getting the feeding tube and has managed to jump onto the growth chart with the help of Elecare and then a blended diet, he is in feeding therapy to get him eating by mouth but with sensory issues that spill over into feeding and low oral motor tone he still struggles. He also has iron deficiency anemia, chronic sinusitis, PE tubes for chronic ear infections, and wears adorable eye glasses for strabismus, amlyopia and pseudopapildema. He primarily uses american sign language to communicate although he is getting better with. We open our home every day to nurses and therapists to help make Sean better, working on his sensory impairment, developmental delays and his medical issues require a team of professionals. We chose Dana to do our ITA session so that we could have a memory of our first family vacation. She did an amazing job and we had a wonderful time.
Abigail was diagnosed with congenital scoliosis with thoracic insufficiency when she was a year and a half old. Her spine was deformed at birth and by the time she had her first surgery, her curve was almost 90 degrees. She has a device attached to her spine and rib which straightens her spine somewhat, but most importantly allows room for her lung to expand. An otherwise perfectly healthy child, Abigail has not allowed her condition to slow her down. She is a very athletic girl and LOVES to play basketball. With three older brothers, she is learning quick. In order to keep up with her growth, Abigail has surgery every 5 or 6 months. She has had 9 surgeries so far and will continue to have them until she is done growing. Her perseverance and courage have taught so many great lessons to others around her!
John Nicholas was born on March 19, 1999. He was diagnosed the morning after he was born with Transposition of the Great Arteries. He had his first heart catheterization when he was 4 days old. His first open heart surgery followed when he was 6 days old. Complications from his first surgery led to a second open heart surgery when he was 6 months old. He was followed closely over the next few years, but a third open heart surgery was necessary when he was 4 years old to give him a new pulmonary valve. John Nicholas did well initially, but in time this valve failed and he also developed an aneurysm in his heart. We were told surgery to try to correct this would likely kill him so we waited. When we could wait no longer, we met with a new surgeon hoping he could help. In June 2010, John Nicholas received the incredible gift of a donated pulmonary artery and valve. We will be forever grateful to the family who gave this gift. In July 2011 we were blessed again with a precious b! aby girl. Our daughter Anna Britt also was born with congenital heart disease. She has Patent Ductus Arteriosis and Patent Foramen Ovule. Her cardiologist is monitoring these holes in her heart. They will be closed when she is older. Our children are our world and we adore them and their special hearts!
Hi, my name is Nina Claire Patterson and I am 13 years old. I was diagnosed with Chiari Malformation, Syringomyelia and curvature of the spine just before Christmas in 2008. Basically, that means that my brain was too big for my skull so it was blocking my fluid and the fluid backing up caused my spine to curve from side to side. At first, I felt clumsy because I kept tripping and dropping things. Later, I had problems eating because I had constant dizziness, headaches and nausea. I really like swimming, playing volleyball and having fun. I’m glad we’re fixing it now so I can grow up with my sister, Carly Reese, and we can be healthy together. She is my best friend and the first person I asked for after my surgery so I could hold her hand and tell her that I was ok. When I think about my Chiari and the surgeries, I remember how much pain I was in after the surgery. I have never had such a bad headache. I remember my Mom taking a picture of the stitches with her phone and showing me. My neurosurgeon—who is the greatest—is Dr. John Honeycutt. I really connected with him because he has a daughter my age, he has a scar on the back of his head and he likes Twilight! He did not shave my head, so when I was playing in the game room and sitting in the chapel, I looked like everyone else. I was really worried about that after I saw some pictures on the internet and watched videos of the surgery on YouTube. I had a lot of questions and I learned so much that I could explain to my friends and teachers what I was going through. I even did a presentation to my class to show them what it was. On October 19th, 2011, I reached the two-year anniversary of my second decompression surgery and removal of my first vertebrae to make room for my spinal fluid to flow. I will always have my scar on my head to remind me to tell people how important it is to have places like Cook’s and doctors like Dr. Honeycutt to take care of other kids like me.
Addy is the most delightful little girl ever! We waited over two years to adopt a little girl with Down syndrome. We were matched with her birth parents when she was 6 months old and we brought her home at 9 months old. At that time she had had multiple surgeries and hospitalizations. She was on oxygen 24 hours per day, had 4 breathing treatments per day, was fed via a JG Peg tube 20 hours per day, had a colostomy and a mucous fistula. She was a sick little girl! She is now thriving and the only health issue we still deal with is feeding. She has had 14 surgeries and one tough little cookie!! We adore this child that God has blessed us with and can’t imagine our life without her!
Sienna was a full term healthy baby. When she was 3 months old she got a virus and ended up in the hospital. After a week in the hospital she was severely dehydrated and they decided to feed her intravenously. They had to intubate her to acquire a central line through her neck and when she was extubated, her vocal cords were paralyzed. She had a tracheotomy in October of 2007. After 10 months with the trach one of her vocal cords began moving and we were able to decannulate. She still has one paralyzed cord. Most days you’d never know what she went through except for the scar on her neck, but there are times we still see signs of respitory distress and it can be scary. Sirenna’s smile and upbeat look on life keep everyone around her smiling and laughing as well. She is a true inspiration.
Brooke was just 2.5 years old when we went into the hospital to treat a urinary tract infection and came out with a diagnosis for cancer. In June 2010, blood started appearing in the urine of our beautiful, happy little girl. We took her to our family doctor and she was treated as having an urinary tract infection, but the blood in her urine did not go away and, in fact, became more prominent. We were scheduled for an ultrasound in September, but not willing to wait all summer, we arranged to have Avery (Brooke’s newborn baby sister) babysat for the day and decided to take Brooke to the emergency room at our local children’s hospital instead. We’re glad we listened to our hearts, for sure enough, within a day, we received an ultrasound that confirmed out worst possible nightmare. The doctors had found a mass on her right kidney and diagnosed her with Wilms’ Tumour, a form of childhood cancer that generally affects the kidneys. We were shocked—how could our child, who had never complained of any pain or fatigue, be sick? She was so energetic, so robust, so unbelievably healthy! Brooke began weekly chemotherapy treatments a week later to treat the cancer and a possible lesion on her lung. She was a trooper! For six months, she endured every medical test and trip to the hospital with a smile. And, even though she lost weight, she lost her ruddy glow, she lost her appetite and all of her hair—she never lost her spirit! She never lost her smile or the twinkle in her eye! Brooke’s final chemotherapy treatment took place on December 21, 2010. Boy, did our family dance at the New Year’s Eve party that year! We began 2011 very thankful for our blessings Brooke was given a clean bill of health! A year later, Brooke is a smiling kindergartener. She enjoys ballet class, playing princess dress-up and painting—she has even auctioned off some of her paintings for charity this past year! And, we are happy to report, that Brooke’s CT and MRI scans are still coming back clean and clear. We hope and pray that they will continue that way for the rest of her long and happy life!
Kaelyn Danielle was born 6 weeks early on October 5, 2011 with complex congenital heart defects. She has double outlet of the right ventricle, ventricular septal defect, tetralogy of fallot, and pulmonary stenosis. She had open heart surgery on November 9 to place a BT shunt, Her left vocal cord was damaged during the operation. This has caused her difficulty in swallowing so she is now unable to eat by mouth and requires an ng tube. Kaelyn does occupational therapy and we have hopes that her vocal cord will heal or can be repaired one day so that she will be able to eat by mouth again. She will have to have 1 more heart surgery for a total correction when she is bigger. Kaelyn is so full of life, she has a sweet bubbly personality and has shown so much strength!
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!
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. (Update- AA has earned his angel wings!)
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.
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.
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!
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!
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!
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.
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!
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.
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.
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
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.
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.
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!
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.
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!
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!
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.
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!
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.
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.
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.
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.
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!
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!
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.
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!
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!
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.
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.
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!
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!
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.
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.
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!
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.
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.
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.
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.
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.
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.