Meet our Kids, Meet our Miracles
Take a moment to meet the heart and soul of our philanthropy. Our Miracle Children are the inspiration for every student who is part of DM at UF.
Meet Adam M.
When Adam was born he was not breathing and was blue so his family was transferred to Shands. After being born he spent 4 days in the Cardiac ICU. He was diagnosed with Tricuspid Atresia. He had regular appointments with his cardiologist and had an open heart surgery at 14 weeks. Now he continues to be regularly monitored. For a child that has half a heart, it is truly amazing and inspiring to see how he fearlessly attacks life. He is full of joy and energy and he quickly lights up a room.
Meet Adrienne W.
Adrienne was born a healthy 8lb/2oz in Ohio. She had been checked out prior to birth because of her brother’s heart defect and all seemed well. Little did they know her issues would be completely different, but just as difficult to deal with! Adrienne was diagnosed with Hydrocephalus and Arnold Chiari Type !. In 2007 she had a VP Shunt put in, 2008 her first posterior fossa decompression, 2010 her 2nd posterior fossa decompression. In between her posterior fossa decompressions she had a mic-key put in. Adrienne has always enjoyed life. She is happy, active and gifted in academics.
Meet Alyssa M.
Alyssa was born at 26 weeks weighing 1 lb 4 oz, 20 yrs ago (1996). Due to the prematurity she developed hydrocephalus which has led to multiple neurological problems, and emergency surgeries. This has left her with cerebral palsy and other neurological issues.We call them issues because they have become part of our daily lives and we don not let them stop her.Her last admission was thankfully 3 years ago but we have many clinic appointments with all the wonderful Shands doctors who have kept her alive and stable. She is also deaf, for which she had a cochlear implant placed in 1999. Today she loves school, riding her bike, swimming and riding horses.
Meet Anna Rose
Anna Rose got sick on Jun. 2, 2013. Her family took her to Arnold Palmer Hospital, and she was transported to UF Health Shands Children’s Hospital a couple days later. Anna was in heart failure.She was tested for a possible heart transplant in Feb. 2013 and received her new heart on Mar. 2, 2014. She left the hospital on Mar. 28, 2014. Anna calls her new heart Prince Toby even though she doesn’t know anything about her donor.
Meet Arden T
When I was only three months old, doctors told my mommy and daddy that I needed a heart transplant. I was sent to UF Health Shands Children’s Hospital where I was put on a ventilator to help keep me alive until my new heart was ready. That machine was purchased with funds from Children’s Miracle Network Hospitals. After I received my transplant, my doctors learned that I have a rare and progressive disease – Leigh’s Syndrome – which is a mitochondrial disease. Because my condition is complex, I visit UF Health Shands Children’s Hospital and Arnold Palmer Hospital for Children quite often and have seen the Miracle Balloon sticker on the medical equipment CMN Hospitals has helped purchase. When I am at the hospital for long periods of time, CMN Hospitals helps make my hospital stays a little brighter by supplying toys to the Cardiovascular Intensive Care Unit.
Meet Ayden M.
On January 7, 2013, Ayden woke up early screaming that he didn’t feel well. He had a high fever, so his mother tried to cool him off in the shower, but he just lay there screaming and convulsing for a few minutes. When he woke up he continued staring off. He was unresponsive, and he could not walk or talk. His mother took him to MRMC where he got a CT scan. The doctors said he had fluid on his brain, so he was taken to UF Health Shands Children’s Hospital. After an emergency MRI, the doctors discovered a large mass tumor connected to his central nervous system and cluster tumors in his optic pathways. Ayden immediately went into emergency brain surgery to place shunts in the outer cavity of his skull to drain the fluid out of his head and down into his stomach. Doctors later found a cancerous tumor on his heart. After a year and a half of chemotherapy treatment, Ayden is completely blind from the pressure of the tumor on his brain and optic nerves. He has undergone a total of 17 surgeries, and doctors have deemed him stable. Ayden’s family is moving to St Augustine where he will attend the Florida Blind and Deaf School. Life changed completely for Ayden and his family after his diagnosis, but because of donations to Dance Marathon, he is receives top-quality care and treatment at UF Health Shands Children’s Hospital.
Meet Bailey A.
Bailey was born with a rare chromosomal condition called Turner Syndrome in which the female is missing an X chromosome. Turner Syndrome occurs to 1 in every 2000 live females births. Some conditions can be heart and kidney defects, hearing or eyesight problems, short stature, swollen hands and feet, scoliosis, learning disabilities and even infertility. When Bailey was born, we had never heard of Turner Syndrome and the only information we had was what we could find on the Internet. Bailey was home for 3 days and then spent the next three weeks of her life in the cardiac NICU having a repair done on the coarctation of the aorta of her heart. She started a daily injections of Growth Hormones at age 2 and will continue to take them daily until puberty. Bailey attends the UF Turner Syndrome Clinic every 4 months where she is seen by many specialist such as endocrinology to monitor her growth, cardiology for EKGs and Ecos, nephrology to monitor her single kidney, psychology for education consults, and dental as needed. In the beginning, it was hard to accept this diagnosis. People quickly learn that Bailey is just an active 6 year old with a bright bubbly personality who touches lives everywhere she goes! Our family continues to spread awareness of Turner Syndrome by hosting "chasing butterflies walks" annually.
Meet Bailey W.
Bailey was born January 2, 2009. Everything looked normal until she was 5 days old, turned a little blue while eating and an x-ray showed an unusual spot in her lung area. She was transported to Shands and was diagnosed with a diaphragmatic hernia. After that surgery they had to do surgery on her stomach. Then a hole in her heart, eye surgery, tubes in her ears, and more. She was also born with hip dysplasia so she had to wear a harness. More recently she got hearing aids and had breathing problems. She is better off than many miracle children, but the story seems to get new stuff constantly. She is an inspiration to me. She is always so upbeat and happy.
Meet Bennett J.
During my pregnancy I received several fetal echos and heart monitoring screens in order to prepare for the safest delivery of Bennett. Ended up have another c-section to ensure no strain on his heart for delivery; once he was born he was whisked off to the NICU 3 for monitoring. The doctors wanted to make sure Bennett’s o2 sats would stay up 70%, if not he would require surgery right away. Bennett’s oxygen saturation levels were maintaining is the low 70’s which made doctors happy. He was transferred to NICU 2 and we were finally able to hold him and I was allowed to nurse him, when he was 4 days old. Since his saturation levels were maintaining he was discharged home with pulse ox monitoring and weekly cardiology appointments. The plan was for Bennett to get bigger and stronger before needing to do surgery. We only stayed home for 1 week before Bennett was admitted back to the hospital. His o2 sats were low at his cardiology check up. Lab work showed that his hct was low and required a blood transfusion. My mother in-law was a match and was able to donate blood to Bennett. After receiving the 2 units his o2 sats came right back up. Unfortunately also ended up showing he had SVT (supra ventricular tachycardia) and was placed on propranolol to help slow his heart rate. After 1 week he was sent back home. Bennett progressed well and grew bigger than expected. Doctors were so happy with his size and said you wouldn’t even know by looking at him that he was a heart baby. On December 5 th , at 3 months old, Bennett had his first open heart surgery. He had a bilateral bidirectional glen with pulmonary banding. Surgery went well and he was discharged home a week and half after surgery. Unfortunately he ended back up in the hospital 1 week later. Fluid accumulated around his heart. They had to drain it. So Bennett checked in for another week stay. Since the last procedure in January, Bennett has stayed out of the hospital and his progressing great. He will be 3 this August, he next cardiology appointment is in June. His doctors mentioned at that appointment, they will most likely schedule him for a cardiac cath, to gather more information and help determine when his next open heart surgery will be. The final repair is called the fontan procedure. After this surgery, Bennett should be in the clear. If for some unseen reason his heart begins to fail after this final repair he would need a transplant, but this isn’t a thought in anyone’s mind at this point because Bennett is fighting his CHD like a true warrior.
Meet Caitlyn B.
Caitlyn was very sick and having recurrent crisis. She was a baby and diagnosed at 2 days old. At her very first checkup her parents noticed her lips were purple and she had lost some color in her skin. Caitlyn was diagnosed with Sickle Cell Disease and she receives transfusions once a month to help her. Everyday is an ongoing battle, but she tries to make the best of every day! Her favorite day is her birthday because she is so grateful to be blessed another year.
Meet Camden A.
Camden Ayres was born on Father’s Day in 2011. We quickly learned that everything was not what we expected. Camden was sent by air ambulan from Fort Walton Beach to UF Health Shands Hospital due to a severe congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia. After several weeks we learned that his heart defect was caused by a genetic syndrome called DiGeorge Syndrome. Camden has endured two major open heart surgeries, 2 major abdominal surgeries, 6 heart catheterizations, and countless other procedures requiring anesthesia. Camden suffered some complications from his second open heart surgery that resulted in him going into right sided heart failure and he had to spend five days on the most advanced and risky form of life support possible called ECMO (Extra Corporeal Membrane Oxygenation). While on ECMO Camden suffered a very severe and debilitating brain bleed resulting in the loss of 95% of his motor skills/abilities. One year later Camden came down with RSV and his heart failure got worse. It was at this point we were told that he probably would pass before he turned three. Camden clearly didn’t agree with that prognosis and now at five years old he’s still going strong and showing heart failure who’s the boss! Through extensive physical and occupational therapy, we are happy to report that Camden is regaining some of his mobility though he will likely never walk or talk. In addition to PT and OT we are working with Speech and Vision therapists to evaluate and get Camden a communication device with the hopes that one day he will be “talking” up a storm and telling his own story at CMN events!
Meet Catherine M.
Catherine was diagnosed with Juvenile Idiopathic Arthritis when she was six years old. When she first got sick, her parents thought it was the flu, but she kept getting worse. . She was in the hospital for weeks because the doctors had trouble diagnosing her. . During the first few years, she was sore, tired and taking a lot of different medications. Over the past few years, her arthritis has been under control, and she has been in remission, , but there have been periods of time when her arthritis has flared and caused other complications. In third and ninth grade, Catherine experienced very painful buildups of fluid in her chest. She has since gotten her arthritis back under control and is living a normal teenage life.
Meet Catriona C.
Catriona was diagnosed with asthma before she was even six months old. Just before her fourth birthday, she passed out after running into a store in the rain. She was sent to Joe DiMaggio Children’s Hospital where she learned that she had a rare and life-threatening condition called Primary Pulmonary Hypertension. Her doctor placed her on experimental medicine for about a year. Catriona went to UF Health Shands Children’s Hospital and received new medication that pumped directly into her heart. When she was almost seven, her heart was not doing well, so she was admitted into the Shands PICU to wait for a heart/lung transplant. She spent 345 days there and got her heart/lung transplant just after her eighth birthday. Catriona’s white blood cell count is low so, she is enrolled in do K12 Florida Virtual school at home.
Meet Courtney H.
Courtney was diagnosed with stage 5 Retinoblastoma in her right eye in February of 2013. After three rounds of chemotherapy treatments, her doctors decided it would be safest to remove her eye to make sure the cancer did not spread. She is now a healthy 8 year old who loves to dance and play soccer! Courtney continues to receive the best follow-up care and treatments at UF Health Shands Children’s Hospital to keep her healthy.
Meet Dani-Lynn E.
Dani-Lynn was born in Jacksonville may 5th, 2015. At 8 days old my 2 daughters, my husband and two very good friends watched our baby get wheeled into surgery. After hours of tears, worry, phone calls and visits from church friends We got the call. She made it through surgery and she was alive! After a total of 5 weeks in the hospital we were going home. The months that followed were rough. Dani-Lynn started to become very congested but her previous cardiologists didn't seem concerned. I continued to take her to the ER but kept getting sent home with no answers I kept calling her cardiologists and never got answers, I kept being told i was an overprotective mother and my baby is fine.... My baby was not fine, she was struggling to breath, her o2 was steadily dropping and her color was starting to change. On a cold Dec. Day in 2015 was the day that our lives did a 180. I checked her o2 and it was in the low 60's, I knew this wasn't right, her congestion was worse. After putting a call out to her cardiologist and her surgeon calling me back and canceling her second surgery because of the congestion and her previous cardiologist not communicating with her surgeon I made a life changing choice. My motherly instinct kicked in and on that december day, we became a shands Gainesville family.I took her into the ER and told them at check-in "I have a heart baby, we are from Jacksonville and She has been heavily congested for 4 months and her oxygen levels are low." That was the day I was told by many medical staff your daughter is a miracle and we can't explain why she's alive! You see, dani-lynn was 7 months old, she had outgrown her first open heart surgery by a few months and her o2 was in the 60's. They had a hard time finding her shunt on an ultrasound. I had my other 2 daughters with me, my husband was almost 2 hrs from us and we were getting admitted! Dani-Lynn has Congenital Heart Disease, 3 defects to be exact. She has Hypoplastic Left Heart Syndrome, Ventricular Septal Defect, and Partially Anomalous Pulmonary Return. She has undergone 2 of the three hlhs surgeries. Due to her papvr she will be undergoing another surgery August 29,2016. Her surgeon will attempt to reattach a vein that is off the back side of her heart. The vein helps control the pressures with her left lung and heart. She has had 2 heart cath's, two open heart surgeries, and many week long stays in the hospital due to surgeries and illness. When Dani-Lynn is having a great day, the volunteers take her for a wagon ride, that’s her favorite thing to do, roll the halls and wave.
Meet Danny P.
At just 7 years old Danny Pinder, alongside his family, has overcome significant challenges day in and day out. Born in the Bahamas, Danny was diagnosed with dysplastic kidneys, a kidney malformation that happened during fetal development. When doctors told his mom, Dominique, his diagnosis they said they could do no more than make Danny comfortable with what they had. It was then that the Pinder family –Dominique, Danny and his three younger siblings – traveled to the United States to receive treatment at UF Health Shands Children’s Hospital. After moving to Gainesville, Danny began treatments for his kidneys at UF Health. Danny receives kidney dialysis three times each week for four hours a day, keeping a wide smile on his face as he talks to his newfound friends. From nurses to other doctors and staff, Danny has made many friends at UF Health Shands Children’s Hospital who genuinely care for him and his family. During dialysis Danny’s siblings, David and Destiny, spend their time painting, drawing and creating new crafts each week with the help of Arts in Medicine. Danny spends his dialysis time watching Cartoon Network and listening to music, especially Nick Jonas. While moving to America has been a challenge to the family, the Pinder family remains positive and high-spirited. Without any local family to help them and the ongoing process of gaining citizenship, the financial burden and stress of hospital life can be overwhelming. Through the kindness of hospital staff and volunteers, the Pinders are able to find support when they need it most. “When he started dialysis, he was a whole different person,” Dominique said. Danny continues to attend school — his favorite subject is math — while waiting on the active transplant list for new kidneys. During his time at UF Health, Danny has made a lasting impact on volunteers, nurses and hospital staff alike with his contagious smile. Each day Danny is happy-go-lucky, loves to laugh and continues to make others smile wherever he goes.
Meet Dylan K.
Dylan was your normal, perfectly healthy, six year old boy. He enjoyed riding his bike, going to the pool, swimming, playing with friends, reading and video games. He was extremely bright and loved spending time with his pets. Dylan had been getting progressively sicker and sicker, losing weight, bone pain and an unrelenting fever. After numerous misdiagnoses, a simple blood test revealed that his marrow had stopped producing normal blood cells and has been taken over by leukemia/cancer. He was admitted to the PICU that night began chemotherapy the next morning. Dylan had Acute Lymphoblastic Leukemia. He received 3 ½ years of spinal, intravenous, intramuscular and oral chemotherapy. He continues to receive follow up care due to lasting effects of the chemo on his body. We all have a whole new perspective on what is really important. We have met some of the most incredible, inspiring people along this journey. It has increased our love and compassion for others infinitely. Some of the bravest people I know are children who smile and laugh through the most horrific of circumstances. My son is one of those and I am thankful for the way my eyes have been opened to the beauty and bravery of others stories. I always say how lucky we are because we have this amazing children’s hospital right in our backyard. People look at me like I am crazy, but it is truly such a blessing. We were able to close to home and family throughout the 3 ½ years of treatment. Having another young child at home, this was so important to me. We didn’t have to sacrifice anything. I had no doubt about Dylan’s team and the incredible level of care and resources available to them at Shands. I know he was cared for by the best! Shands is our home away from home. It is a happy place for us despite the horrible realities of childhood cancer because there is so much positivity, love, compassion and care from everyone there, from his main oncologist, down to the gentleman who uses to bring his breakfast and lunch from the cafeteria.
Meet Elizabeth C.
Elie is 9 years old and was found to have untyped Glycogen Storage Disease (GSD). Three years ago, after vomiting over 30 times and not tolerating any fluids, Elie was brought to Shands Pediatric E.R. where her blood sugar was 42 and ultimately had a seizure. Because of this episode we were referred to Dr. Weinstein, a world-renowned doctor in this field, at UF Health Shands. We learned that patients with this disorder are unable to fully break down glycogen to glucose, and therefore are dependent on a continuous supply of glucose. Without this supply of glucose hypoglycemia, lactic acidosis and seizures can occur. Since learning more about GSD Elie is able to check her own blood sugar and ketones by pricking her finger when she is not feeling well. She has to have a snack every 2 hours and take a protein supplement 3 times a day. Many GSD patients have to take corn starch along with their protein "shake" but Elie is not required to do so. Because of the GSD it can take longer for her to recover from a typical fever or stomach virus. Recently she had a great check-up showing that her labs were normal and she is growing! Even though sometimes she may not feel well she can still be a fierce volleyball player. She plays the piano, builds Legos and loves arts and crafts. Elizabeth is also a lover of animals that are furry and not so furry. We love Dance Marathon because it gives us the opportunity to meet families that have shared a common health struggle. We hope it gives Elie a sense of not being alone in her disease process and also hope to spread awareness of GSD.
Meet Elyse H.
She had ALL leukemia when she was 2 and finished chemo when she was 5. She was misdiagnosed by the pediatrician twice because she didn't have typical symptoms. At first, it was a virus. Then, bronchitis! I called to get her in after she started antibiotics and the nurse called me back and said not to worry. It takes 72 hours for the antibiotics to work. Elyse had a hematocrit on 1.8!!!! A normal reading is 10! If they had just pricked her finger 10 days earlier! She was almost completely out of blood! Needless to say, we got to ride in an ambulance and were admitted to Shands. Elyse was so weak and so low on blood, the doctors couldn't perform a bone marrow biopsy until she had days and days of blood and platelets. Anyway, Elyse stayed in the hospital for 2 weeks, released for 2 days, readmitted for 2 weeks, and so on. We'd have a break here and there and then be back in Shands. While there, we received a duck with a port. This stuffed animal helped Elyse see what was going to be put in her body and helped her understand how important it was. I'm not going to lie. The first six months was very tough. The medicines were very harsh and Elyse was in the hospital numerous times. When reviewing the medicines and their side effects, I thought steroids wouldn't be the problem. That was the one medicine I had heard of. I was wrong! Elyse was starving and moody for a whole month. She doubled her body weight and became diabetic. Picture a three year old who just wants to eat 24/7 and you have to refuse to feed her for 2 hours in order to check her blood sugar. This poor child was begging for someone to poke her finger and bring on the shot just so she could eat. The surgery days were torture. No food after midnight. Thankfully, the amount of steroids were reduced during the 26 month ordeal and the diabetes that were induced by the steroids went away. When Elyse finally got to go to the outpatient clinic at Shands, she'd receive all kinds of attention from the nurses, volunteers and especially Jenna Priest, the Child Life Specialist. She would distract Elyse while her port was being accessed and would really help in keeping me sane. She was always looking out for us and always wanted Elyse to have fun while stuck in clinic all day. Elyse developed a chronic cough that just wouldn't go away. The doctors did X rays, a bronchioscopy, blood work and a CT scan, but could not figure out why she hacked all the time. After 9 months, my favorite PA who had been on the admitted side of Shands asked what her immunoglobulin level was. Of course, I had never heard that word before and just said huh. Another blood test was done and Elyse was introduced to an 8 hour drip of IVIG that finally got rid of the cough. Elyse needed it once a month to keep the cough away and we were all finally getting sleep again. Thank you Kenny! Dr. Slayton from HEMOC combined forced with our new pulmonary doctor to start a study to figure out why certain pediatric cancer patients develop a chronic cough and why IVIG is the only solution. Elyse completed her chemotherapy in October of 2012 and she now goes to Shands for bloodwork and check ups every 3 months. She is a happy and healthy little girl. Elyse does great in school and even tells her story sometimes to her class. Through it all Elyse had a smile on her face (minus the steroid days) and did great with taking her medicines. She is a real hero!
Meet Emily M.
Emily was born 23 weeks premature, so she was born with challenges. Everything was going well until Emily started running into things and her parents realized she was having trouble seeing. She has been blind in her right eye since birth, but has been able to see in her left. Emily’s opthamologist saw signs of inflammation in her eyes and was concerned that she was losing vision in her left eye. Emily was diagnosed with Uveitis. Since the diagnoses they have tried Rituximab, Remicade, and she is now getting Actemra. She gets her Actemra infusions every 8 weeks. Emily has most of her vision, but the medications have slowed the progression. Emily absolutely loves going in for her infusions at Shands!
Meet Garret L.
Garrett was born with a Hypoplastic Left Heart Syndrome (HLHS). He was only 24 hours old when he first began showing signs of heart problems and he was airlifted from the hospital in Lakeland, Florida to Shands Children’s Hospital at the University of Florida in Gainesville. HLHS describes a group of complex congenital heart defects that occur in otherwise healthy newborns. Several problems exist in the left side of the heart in babies born with HLHS. In HLHS, the left bottom- pumping chamber (left ventricle) is very small or sometimes non-existent. In addition, the aortic valve leading into the aorta, the main vessel sending blood with oxygen to the body, may be narrowed or closed. The aorta itself may also be very small and narrowed. Garrett’s condition was severe and he ultimately needed a heart transplant. He received one when he was only three months old. After the transplant, Garrett was growing and developing normally. Then, once Garrett turned six years old, he and his parents received more bad news. Garrett was diagnosed with Burkitt’s lymphoma. Garrett underwent chemotherapy for three months at Shands Children’s Hospital at UF. Not too long after this ordeal. Garrett began to show signs of rejection of his transplanted heart. As a result, he was treated with steroids and comes up to Shands once a month for a special treatment.
Meet Geoffrey P.
We’ve been attending Dance Marathon for 7 years now! It’s been a wonderful event yearly. And we’ve had some amazing opportunities through DM. Geoff was diagnosed with leukemia when he was 4 months old. He went through 1 year of chemotherapy at Shands and has been in remission since then. When he was 10 months he was diagnosed with a hearing loss not related to his cancer or chemotherapy. He was fitted with hearing aids at 12 months old. His hearing progressed to profound hearing loss and when he was 5 years old he got a cochlear implant at Shands. Geoff is a great kid and loves to read. He’s doing well in school and just finished taking his 3rd grade FCAT. He loves his baby brother, Legos, running, basketball, and the Florida Gators!
Meet Gracie W.
Gracie was born June 11, 2014 and weighed in at 5lbs and 19in long. During the whole pregnancy the OBGYN never suspected anything was wrong. I was going through North Florida, where I had my previous birth with my son. Labor was very intense and 13 hours later she was here. We knew something wrong because she was not crying when she finally arrived. She was rushed to the NICU for observation and our world was forever changed. I had never had a baby in the NICU before, so I did not know what to suspect. While she was in there she got a digestive infection called necrotizing enterocolitis. It iss an infection the in the intestines and we were told she might not make it. She was immediately put on antibiotics and after 10 days she was ok. She was finally able to come home after a month of being in the NICU, but we still had a long journey ahead. She was not able to keep her weight maintained and she was constantly throwing up her feeds. After going back and forth with her pediatrician it finally came down to something had to be wrong with her heart. We went for ultrasounds and EKGs and it was discovered that she had 5 holes in her heart that needed to be repaired. It was very debasing to us and we just did not know what to expect. On September 4, 2014 she had surgery and after a few weeks we got to finally bring her home for good. She has a feeding tube, she has slowly began to want to eat orally and we are slowly introducing a sippy cup to her. She does not walk or talk yet and she gets OT PT and ST. She continues to make progress everyday. We definitely have our hands full, but we love every minute of it.
Meet Hadley P.
She is 4 years old and was born with a genetic disorder called Mitochondrial Disease. Powie was initially diagnosed in utero with bilateral clubfeet and abnormalities on her brain and kidneys. Once born, she immediately had feeding problems. Her main health scare came at the age of 2 weeks old. She stopped breathing for the first time for 5+ minutes. We were able to resuscitate her and she was diagnosed with Severe Central Sleep Apnea. At that point, neuromuscular and metabolic diseases became a very real possibility. Hospital stays, surgeries, therapy appointments, more diagnosis became part of our everyday life. When she was 2.5, Mitochondrial disease became the official diagnosis and she began treatment. Her health stabilized to a point and then we moved to Florida. We've been at Shands hospital for almost a year and Powie is thriving under her specialist care!
Meet Hyla M.
Some of you may have heard my story before, but for those of you who haven’t my name is Hyla Marlin, I am 10 years old and in 4th grade. So about 6 years ago, I was diagnosed Wilms Tumor – it’s a type of kidney cancer. I was in New York at a family camp, that’s when my mom and dad realized one side of my belly was puffed up, and they took me to a doctor. The doctor said that I had kidney cancer in my left kidney so the next day they flew me to Shand’s Hospital. A couple of days later, I had a biopsy surgery and then began 9 months of treatment. They had to remove my left kidney and I got chemo, radiation. Then I went back to my home in Belize, Central America. But one year later, the cancer came back in my lungs. I had 9 more months of treatment - I got chemo, radiation and stem cell transplant. It wasn’t very fun. But I loved my doctors, nurses and volunteers. And so many people provided stuff to make it nicer, like child-size equipment for taking my blood pressure, movies and games, because it is really boring being in the hospital all of the time. I love Dance Marathon – they have been so supportive of children like me. And by the way, this past June, I was 3 years cancer free. Thank you for supporting Dance Marathon and all of the other childhood cancer organizations. Cancer sucks.
Meet Isaiah R.
Being the 4th of child, when labor started we expected everything to be routine. Like our previous children Isaiah was born in the birthing tub at The Birth Center of Gainesville. After a seemingly normal deliver our baby boy was placed on my chest. My midwife and I immediately noticed that Isaiah was not crying or breathing normally. After he was evaluated it was determined that it would be in our best interest to transport Isaiah to Shands my ambulance. The response was amazing. When we arrived at the hospital, we were met by Dr. Sandra Sullivan we advised that Isaiah appeared to have a bacterial infection due to meconium aspiration. But, she believed he should be released within a day or so. My husband was starting a new job the next day and we had 3 other children at home, so we were a little overwhelmed. The next morning a social worker came to visit me, she provided me with loads of information regarding what to expect in the hospital, and services available through Children's Miracle Network. By the second day Isaiah's condition had worsen. While we had finally left the hospital to get some rest. Dr. Sullivan called us to advised that we needed to get to the hospital as soon as possible. This was the worse phone call I had ever received. When we got to the hospital we were told that Isaiah also had a hole in his heart. The combination of the cardiac and respiratory issues were preventing adequate das exchange to sustain life. Doctors wanted to put Isaiah on ECMO machine (Extracorporeal Membrane Oxygenation). This surgical procedure would place a tube in Isaiah's neck to his heart which would remove blood that would be replaced by oxygenated blood which would then be pumped back in. Isaiah stay on the machine for 6 days. By this time he had been in the hospital for 2 weeks and his oxygen level were finally improving, but was not able to be released until about 2 weeks later when it was able to get on his own, the oxygen level stayed consistent, and his blood pressure was controlled. At 5 weeks old he was finally released. Dr. Sullivan thoroughly explained everything to us and didn't leave us in the dark. I am forever grateful for her amazing bedside manner.
Meet Izabella N.
Izabella and her twin sister, Jesubelle, were born 3 months premature at Memorial West Hospital in South Florida. At 3 weeks old Izabella had a pulmonary hemorrhage (she bled out from her lungs) which nearly took her life. She was transferred to Joe Dimaggio where she was stabilized and at almost five months old she was diagnosed with an extremely rare disease, so rare that it doesn’t have a name yet. Basically her lungs didn’t work and her only cure or chance at life would be a lung transplant. Two years ago in May we were transferred to Shands Hospital to receive that lung transplant. She was placed on the waiting list and we waited nine months for the call. Doctors never thought she would make it. Her transplant was performed on January 27, 2013 and she was discharged for the first time in her life on March 20th. She has been in and out of the hospital many times since, but continues to amaze doctors with her will to fight for life. CMN has been a great part of our lives in and out of the hospital. Many of the machines used on a daily basis to save Izabella’s life while she was on life support were donated by CMN or by their DM event held each year. DM and CMN have given our kids the opportunity to be "normal"kids outside of the hospital. From the Sweet Dreams event to the FTKarnival Kick off event to Dance Marathon and many other events held by DM and CMN, my kids have enjoyed being surrounded by the young individuals dedicating their lives to helping children like mine.
Meet Jack M.
Jack was born on June 2, 2001 in Tallahassee Florida. He is one of 5 children, the only boy, with one older sister and 3 younger. In May of 2012 when he was an 11 year old 6th grader, he was diagnosed with AML (Acute Myeloid Leukemia). When his bloodwork came back not as mono but Leukemia our pediatrician told us to take him that very day to see Dr. Slayton at Shands Children’s Hospital. Our first few days were a blur of tests and meetings as they worked to define exactly what type and subtype of leukemia he had. We learned that instead of the more common ALL he had AML. We also learned that it was in his spinal fluid as well. The treatment for Jack’s AML was 4 consecutive rounds of chemotherapy. They told us that he would likely be at Shands for 6 months and that it would be unlikely that he could go home at all during that time. And so we became a family divided, with one parent at home with his sisters and one at the hospital from May until the end of October. Jack celebrated his 12th birthday in the awesome game room in 42 Peds with visiting friends, pizza, cookie cake and games. As the treatment continued visits like that would become less possible as he suffered the side effects and other illnesses that come with so much chemo and such a fragile immune system. He was able to keep in touch with some of his friends through xbox live and a several sets of headsets! Through it all Jack was amazing. He defied the odds and we were able to bring him home for a couple of days in between some of the rounds! How grateful we were to all be together and know that he was asleep in his own bed! He always told the doctors, nurses and his parents exactly what was on his mind. He didn’t complain (much), not nearly as much as he should have! His distinctive sense of humor and practical jokes were a joy and we are so proud of him for holding on to that during his treatment! (Ask him about his trip to the PICU and the monitors sometime, or the remote control spider!). jack is our HERO. Our prayers were answered when we brought him home and we thank God every day for his remission! We also thank God for the amazing doctors, nurses, volunteers, social workers, and everyone else who devotes so much of their lives to making it possible for kids like Jack to not only SURVIVE, but to have some comfort during that time! The funds raised by CMN make such a huge difference in the level of care available for these kids! What a difference it makes to know you have available the best and brightest and most dedicated doctors and nurses, the latest drugs and therapies, all of the support staff imaginable to help the kids and their families get through times like these! And to the Dance Marathon kids, you ROCK! It is not just about fundraising, it’s also how you make all of our kids feel special and loved, and we thank you for all that you do FTK!
Meet Jenna D.
In may of 2010, Jenna became ill and was admitted to UF Health Shands Children’s Hospital with what would be later diagnosed as gastroparesis and IBS. She has had multiple procedures, surgeries, and lengthy hospital admissions over the several years to help manage her symptoms. Jenna has personally experienced the difference the programs sponsored by Children’s Miracle Network can make in the life of a child that is confined to the hospital.
Meet Joseph P.
Joe was born 2 months premature 2 pounds 11 ounces I have neurofibromas, seizures, high blood pressure I had a mild heart attack at the age of 7. And through it all my recovery and progress would not have been made possible with out Dance Marathon and now that I can give back by dancing my self. For the kids.
Meet Jude and Oliver S.
They were born at 26 weeks gestation (over three months early) and spent the first three months of their lives at the Shands NICU. Both boys spent time in "giraffe" beds to control their body temperatures, on IV feeds then feeding tubes until they were big enough to begin bottle/nursing, were treated for infections, received blood for anemia. Oliver additionally underwent a PDA ligation. That's a lot of medical treatment, but we were actually really fortunate to not endure some of the more dire situations that micro preemies may experience. After leaving Shands, we've been lucky enough to not need readmission for anything. At 4.5 years old, the only issues we face are with asthma and some allergies. Jude and Oliver are both really energetic, curious boys. They love playing pretend, building with their Legos, take gymnastics class, and are finishing up their VPK year at St. Michael's Day School, to begin kindergarten this Fall.
Meet Julissa Y.
Julissa was playful and energetic. She attended Kinderoo day care while mom and dad worried. She loved being at school, at church, and with her friends. After numerous fevers and a decrease in appetite, Julissa was brought to the emergency room to have her blood tested. After testing, Julissa and her family were immediately on an ambulance to Shands. Julissa was diagnosed with acute lymphoblastic leukemia on December 2, 2015 and she has been undergoing chemotherapy treatment ever since. She rarely has days when she feels tired or sick. Once she began treatment she went back to her playful and energetic self.
Meet Kaedyn B.
Kaedyn B. is the five year old son of Nic & Shelsie who was diagnosed with A.L. Leukemia on Fridaythe 13, 2010. Kaedyn was born on September 22, 2009. He was over 8lbs in the 98th percentile in growth stats and looked to be the picture of newborn health. Kaedyn did many things early. Walking at nine months and scrambling to run in the last few weeks as he tried to keep up with his brother Kaleb (his hero) were things he tackled with spunk and determination. Two and half weeks before Kaedyn was checked in at UF Health, Shelsie took him to see his pediatrician because his cheeks were a little swollen. After a quick visit, Kaedyn was diagnosed with the mumps. A week later, his symptoms continued to worsen to include continued swelling in the cheeks and obvious pain in his stomach so Shelsie and Nic brought him to the E.R. They were then told that he was just experiencing the effects of mumps and were directed to take him home being sure to keep him in isolation. On Thursday night in the wee hours, his pain grew excruciating so he was again rushed to the E.R. where finally, doctors finally diagnosed him with leukemia and he was rushed to UF Health Shands Children’s Hospital. Blood tests confirmed that Kaedyn indeed has Acute lymphoblastic leukemia (ALL) which is a cancer of the white blood cells, the cells in the body that normally fight infections. Kaedyn finished his treatment on August 14, 2013. In just 4 months after treatment ended his cancer returned. His best chance at a cure was a Bone Marrow Transplant. He spent 4 months in the hospital with only a weekend break. He needed chemotherapy and radiation to get his cancer back under control. It was a very rough patch with multiple infections and him not being allowed out of his room. When his cancer was in remission once again he received his Bone Marrow Transplant on March 22, 2013. A month after his new cells entered his bloodstream he left the hospital and to this day has not been admitted. He is doing fantastic and is truly a little miracle child.
Meet Kaitlynn G.
At my 24 week ultrasound appointment we learned that Kaitlynn had a Congenital Heart Defect known as Transposition of the Great Arteries or TGA. TGA is where the two main arteries are switched, so the correct blood flows are not going to the correct areas in her body. Kaitlynn was born at 35 weeks. I had an emergency C-Section, and she was brought into this world on April 30, 2015. As soon as she was born, she stopped breathing, and she was taken away from me right away. Thankfully a doctor that was there for a "just in case" scenario, was needed. He performed a balloon septostomy, which just put a hole in her heart to keep all the blood flow the same. As soon as she was as stabilized as she could be they took her into the NICU to do everything else they could to stabilize her to transfer her to Nicklaus Childrens Hospital. At two days old I received a phone call from my husband saying that she has a blood clot in her leg and that we have two options. one was to amputate her leg, and two was to give her a medication that will solve the blood clot but it could send blood rushing to her head and cause neurological damage. This was devastating news for my husband and myself. The blood clot was caused by the balloon septostomy that was performed right after birth. The procedure was first performed on the right leg which broke the blood vessel, so they attempted on her left leg, which was successful. That same say she needed a blood transfusion, which she had. We got the news at three days old that, that coming monday they were going to perform her surgery. She was not stabilizing the way that they were hoping. She had her arterial switch, which is the procedure to correct the transpostion, at 5 days old. It was a complete success. She did very well during surgery and, Surprisingly, did not need ECMO. Although the doctors did say there may be a chance that she could need ECMO. The day after surgery the doctor noticed her heart was leaking, they ended up having to patch a small hole that was leaking. Two days after surgery, Doctor Burke decided it was time to close her chest. Another success. Doctors attempted to extubate her, which unfortunately was not successful. She was still too sedated and paralyzed to breath on her own. About four days after surgery, I was notified that she had a collapsed lung, which is pretty common after a surgery. Three days after the failed extubation, they attempted again, thankfully this one was a success. That same day, she was very close to heart failure. She was given a medicine called Ativan, which calmed her down to relax enough. She had good days and bad days, which I knew were going to happen. 20 full days after she was born, I was FINALLY able to hold her. It seemed that after that, EVERYTHING started to turn around. On March 27, we got the news that she was able to go home soon. On June 1st, we were able to take our little 5 pound peanut home. She went home on only two medications. She is now almost 19 pounds and is taking over our home! She loves just about anything and anyone! I have never seen such a happy, go lucky kid. We are so blessed to call her OURS.
Meet Kalee E.
Hi, my name is Kalee. I’m 19 years old and have been treated at Shand’s for over three years now. I was transferred to Shand’s in 2011 when I was diagnosed with a slew of autoimmune and neurological related disorders including- Crohn’s Disease, Celiac Disease, Behcet’s Disease, Pain Amplification Syndrome, Anemia, Chronic B12 Defiency, Mitral Valve Prolapse, and Enthesitis Related Arthritis. My one doctor refers to it as a having a “cancerous” immune system. I am treated with immunosuppressant infusion therapies, steroid injections, and small doses of chemo I receive in variation every couple weeks. On top of regular procedures, I am also placed on a full liquid diet or feeding tube and dozens of medications to keep things in line. Thanks to the support I have received at UF Health at Shand’s, I am now a premed college student at the University of Florida hoping to one day make an impact similar to the one my doctors had on my life.
Meet Kasey V.
Kasey is a 6-year cancer survivor. She was diagnosed with Neuroblastoma when she was 9 months old. She had many surgeries. She also had 9 rounds of chemotherapy. Each time she had chemo she had to stay at the hospital due to her age. Kasey is a strong little girl and loves life to the fullest.
Meet Kendall L.
"Miss K" was born on June 2, 2011 by a planned repeat C-Section and transported to UFHealth and Shands within the first few hours of her life. We didn’t know about any of her issues prior to her birth. Within the first few hours, it was determined that she had VACTERL Association. This is an acronym that represents a number of things. (V=Vertebrae or Spinal issues) She has a hemi/half vertebrae (wedge shaped) L4, deformities of the sacral/coccyx, and a tethered spinal cord. (A=Anal) She had a low imperforated anus, basically meaning she was born without the anal opening where it should have been. (C=Cardiac) She has Tetralogy of Fallot with Pulmonary Atresia, TOF/PA. The vein/valve that bring the blood to your lungs from your heart was essentially non-existent. She has a number of other issues with her heart as well. (T=Trachea) She had a tracheoesophageal Fistula with... (E=Esophageal) Esophageal Atresia. Simply put, she had an abnormal connection between her trachea and her esophagus and her esophagus wasn’t attached to her stomach. (R=Renal) She has a duplicated collection system on her Right Kidney. (L=Limb----> simply put, some people can/will be missing odd bones in their body for no reason. This is the only component of this that she doesn’t have). In addition to these issues, she also has some extensive Pulmonary Complications as well as Immune System complications. Prior to the Summer of 2014 , when her second heart surgery was done, she was placed on infusions to help boost her immune system, she continues to take these once a week. As of Spring 2015 Kendall was placed on another type of Infusion to help stop her body from rejecting her new heart Conduit. UF Health and Shands has been our home away from home from Day 1. She had her first set of surgeries when she was 5 Days old. Her first Open Heart Surgery when she was 26 days old and her 2nd Open Heart Surgery at age 3. We are currently scheduled for Miss K’s 3rd Open Heart Surgery in less than two weeks (May 2016). We are followed by 7 Pediatric Specialties (Cardiology, Pulmonary, Pediatric Surgery, Immunology, GI, Nephrology, & ENT). We have nothing but love for our pediatric departments here at UF Health and Shands and everything they have done for us.
Meet Kirstyn T.
Kirstyn, age 11, was born at 39 weeks gestation and received some abnormal blood work when she was 24 hours old. She was transferred to Shands at 24 hours old to receive triple phototherapy for advanced jaundice. That was just the beginning of our journey. Kirstyn responded well to the jaundice treatment but on day 7 she began experiencing some breathing issues. After close observation she was transferred back to the NICU where her health continued to decline hourly. They did not think she would live through the night. The doctors started treating her symptoms and called the Genetics team. She had an ammonia level of over 700 and her organs were starting to shut down. She spent 9 weeks in the Shands NICU and has had about 14 additional hospital stays over the years . Her official diagnosis is Propionic Acidemia, which is a rare metabolic disorder that happens in 1 in 100,000 births. She truly is a Shands miracle baby. She also has cardiomyopathy that occurred with her diagnosis. In addition she has ADHD. The genetics and cardiology programs at Shands have definitely become the wind beneath her wings. She has a g tube and was thrilled to meet other kids at the CMN event with tubes as well. We are truly a family that loves Shands!
Meet Lucy Jane
At 28 weeks gestation, I was told that my unborn baby had a Congenital Diaphragmatic Hernia (CDH). This meant she had a hole in her diaphragm and the organs below her diaphragm could go up through the hole and into her chest cavity. They would then take up the lung space and impede them from growing. As well the organs pushed the heart over to the right side of her body. We lived in Dallas, TX at the time and knew we needed to find the best doctor and hospital in the country to deliver our baby. We found UF Health and Dr. Kays pretty quickly and knew that’s where we would go. We came to Gainesville 1 month before she was born in order to see the doctors throughout the month and make sure we were in town when she was ready to come. I was induce on November 7th and on November 8th, 2011 she made her appearance into the world. I gave birth in an operation room at UF Health, because they needed so many doctors and nurses to fit in the room. We were told that she would not cry when she came out because she wouldn’t have much lung capacity. But, she’s a fighter and the first thing we heard when she came out was a cry. They rushed her off to the side of the room and started to work on getting her intubated and set up on a breathing machine and then took her off to the NICU. They got her stable and let her rest for a day and recover from birth. On day 2 she went in for surgery to repair her diaphragm and see how much lung tissue she actually had. They found that she had 80% of her diaphragm, 70% of her left lung and 100% of her right lung. Over time her heart moved back to the correct position in her chest. After surgery she continued to be on a breathing machine for another 8 days as she learned how to breath on her own. In a 24 hour period the doctors took her off the breathing machine, put her on a c-pap, took her off the c-pap and put a nasal cannula on her. At 10 days old we were able to hold her and feed her for the first time. A few days later they moved her into the step down NICU to learn to eat and gain weight. While still in the NICU, they performed an MRI on her to get her ready for discharge, and they found a blood clot in her brain. A few days later they did another MRI and it showed that the clot had changed slightly in size and they felt like over time the blood would find alternate routes around the clot. She was released from the hospital at 3 weeks old with no air or feeding tubes! This is a big feat for babies with CDH. We ended up going for a check up MRI 6 weeks later to see if her blood clot had changed, and at the appointment they told us it had completely dissolved. We truly believe Lucy Jane is our little miracle and we know that God has used her and her story to share His love to a lot of people.
Meet Luke L.
Luke was a perfectly healthy kid up until he was 18 months old, we started noticing he was acting differently. He started getting bruises all over his body, so when we took him to the doctor, we were told he had Acute Lymphoblastic Leukemia. He immediately started treatment at Shands and will continue to receive chemo treatments for the next 3 years. He is always smiling through all the hardships he faces every day. All the doctors and nurses love to play with Luke and he loves them all too!
Meet Madison G.
Madison was just two years old when she came to UF Health Shands Children’s Hospital. Since being diagnosed with a Wilms Tumor in her right kidney, she has undergone surgery and experienced many hospital visits during treatment for this rare form of cancer. Madison has recovered beautifully and she is almost five years cancer free! Her mother Ashley describes their last day in the pediatric infusion room as a celebration, where Madison’s nurses gave her a trophy that she still keeps by her bed. For her parents, UF Health Shands Children’s Hospital was a no-brainer as it is where Madison’s aunt, Dr. Shelley Collins, is a pediatric doctor. Her mom reflects on being in the hospital for five days and many chemo treatments with a two year old, mentioning “the toys, games, movies and playful distractions that CMN provides the children are vital to getting through the long days.” Amazingly, the Greene family says the most positive outcome has been becoming more active in organizations, like CMN, that help ill children and their families.
Meet Mason H.
Mason was born at Shands with a congenital heart defect, Transposition of Great Arteries. He is a CMN Ambassador and loves participating in Dance Marathons. He is a true Gator fan and we look forward to going to the one at UF. Thanks for all that you do for such a great cause!
Meet Mateo H
On February 4 2014, at my 23 weeks of pregnancy in a regular checkup, the doctor noticed that something in Mateo’s heart wasn't right. After hours and hours the Doctor confirmed that Mateo had HLHS, Hypoplastic Left Heart Syndrome. On that day our world fell apart. All the doctors we met in PR basically told us that Mateo had no chance at all and that we should prepare ourselves to say good bye as soon as he was born. We just couldn't do that, we started researching and found UF Shands Congenital Heart Center. Since our first meeting with Dr. Bleiweis’s team at the Congenital Heart Center they told those that he had a chance, not an easy one but a chance nonetheless. Since that day the team has become Mateo’s and our surrogate family. Everytime he has hit a bump on the road or we’ve needed any kind of help or motivation they have been there, no questions asked!. After two very intense open heart surgeries to prepare his body to live with only half a heart, today Mateo is a very active, determine, stubborn, playful, smart little boy who loves playing soccer all day long, watching Mickey Mouse Clubhouse, Peppa Pig, Daniel Tiger, likes to dance and to watch music videos.
Meet Matthew L.
Matthew was picked up by ambulance and then airlifted by the ShandsCair helicopter from Spring Ridge after suffering a brain aneurysm. A brain aneurysm is a ballooning-out of the wall of an artery in the brain. Often this wall is weakened by disease, injury or an abnormality present at birth. They aren’t always life threatening, but serious consequences — such as a stroke — can result if one bursts in the brain. He was treated in the PICU at Shands Children’s Hospital at UF from June 15 to July 13. He has recovered amazingly and will be returning to school this week.
Meet Max W.
Max was born in Ohio with a Congenital Heart Defect known as Hypoplastic Left Heart Syndrome. After his first three surgeries he was brought to Florida. He had banding of his pulmonary arteries and PDA Stent in 2002, Norwood State I and Stage II combined in 2003, and an Extra-Cardiac Fontan in 2005. In 2010 he had an LPA stent placed and now he is healing great!
Meet Mazzy J.
Mazzy was very outgoing and active. She was always busy with school, friends and cheerleading. Mazzy found a lump on the left side of her collarbone. After going to the pediatrician, Dr. Carter sent her family to Shands which is where she was then diagnosed with cancer. Mazzy was diagnosed with Hodgkins Lymphoma in September 2015. She underwent chemotherapy and care for infections and blood transfusion. The most positive outcome has been the amazing huge amount of love and support from all different parts of our community.
Meet Micha W.
I was born three month early, March 8,2000 with many complications. A month later, I developed bleeding in the brain a grade four. This is called hydrocephalus. In May 2000 was my first brain surgery to placed a VP. Shunt. The shunt relieves the brain fluid. From June to September I had three additional surgeries. Being born premature and stay in the hospital so long, you are prone to infections. Due to, the shunt being plastic it's a tunnel to hold infections. That's why the revisions were necessary. In August to December 2013, I had three more brain surgeries. Shunt revisions, because after thirteen years my shunt snapped. Then, the revised shunt must have had a pin hole, because the fluid wasn't draining out. I had an orange size cyst growing in my abdomen, which caused me to have a terrible fungus. The shunt had to be removed until the infection cleared. Six weeks hospitalized, this is how I learned about the Children's Miracle Network (Ambassador Family). l met a beautiful person, named Bailey Daniel. See all that this organization does I wanted to be apart. When I returned home I started making bracelets for the volleyball team and anyone else who wanted to donate to this worthy cause. In 2014 Micha's Jewels raised $35.00 and 2015 Micha's Jewels raised $50.00. In 2016 I had a few medical setbacks and didn't have the energy to put into making bracelets. With God help I'm healthy, strong and victorious.
Meet Michael S.
Michael was originally diagnosed with a brain tumor when he was 2 years old. For 2 years, he underwent a series of MRIs to monitor his tumor. Just after he turned 4, they noticed some changes to the tumor. At that time, he ended up having 2 biopsies on his brain. Unfortunately, it was determined that the tumor was unable to be removed so he was referred to an oncologist to see about a chemotherapy regime. He underwent a year of chemotherapy. During that time, he had several hospital stays due to infection. He was always very brave and never complained. We were so grateful to have toys, games, movies, arts and crafts projects to occupy his time. These were all purchased by Children’s Miracle Network. On top of this, Michael also has a diagnosis of autism. He has been in speech, occupational and physical therapy since he was 18 months old due to the effects of his tumor and autism. He has recently learned to ride his bike and gets joy from bike riding and playing soccer with TOPS soccer. We are so proud of his accomplishments and appreciate the great care he received at Shands Hospital for Children in Gainesville. He still undergoes yearly MRIs and his doctors are very pleased with his progress.
Meet McKenna B.
Just by looking at her, you would never know that McKenna was diagnosed, while still in utero, with multiple complex congenital heart defects. Our family was told, at best, to expect the unexpected, and at worst, that McKenna might not live for very long. But the doctors at UFHealth created a plan that would go into action the moment she arrived to give her the very best chance to survive and thrive. When McKenna arrived in November 2008, she proved to be up to the challenge. McKenna spent a significant portion of her first six months in the hospital. In Spring 2009, McKenna had her first open heart surgery and by late summer, had recovered. Though McKenna had some initial challenges--chewing, speech, to name a couple--her life, and ours, have only improved since 2009. Since then, with the exception of three heart catheterizations in 2013, McKenna has had no additional surgeries. Today, McKenna is a happy, inquisitive and active 7-year-old who enjoys tap dancing, Tae Kwan Do, painting and Disney. While she will likely need future interventions, which are likely to include a heart transplant, for the time being, McKenna is living and loving life. Even with a baseline oxygen saturation level of about 85, she keeps up well with her classmates and is full of energy. She is courageous, kind and loves adventures. We thank God everyday for blessing us with the world-class healthcare McKenna receives at UFHealth. The doctors, nurses and healthcare professionals that make up "Team McKenna" have become like an extension of our family. We are grateful to them, we love them, and we thank God for them every day. In fact, our family moved to Gainesville in 2014 in part to be closer to our team at UFHealth. Now that we are settled, we are excited about adventures to come and sharing our story with others as we get into our role as an Ambassador Family for the Children's Miracle Network.
Meet Miranda L.
Miranda was born dead, resuscitated, died again, resuscitated again - pronounced terminal, put on life support and sent to Shands. She had aspirated fluid because of a difficult birth and her tiny body shut down. She had no muscle tone and she responded to nothing - not even the many IV’s that were placed in her hands, her feet and her head. They said she would never leave the hospital, but she grew stronger and stronger - and to everyone’s astonishment - she was able to come home. Her quality of life was still in question because she had brain damage and she also had a birth defect called craniosynostosis. She would have a very "challenging" 12 years, filled with 3 major skull surgeries, 9 eye surgeries, 3 blood transfusions, 3 years of physical therapy and 4 very difficult years of school. Miranda has overcome every obstacle and has become an amazing teenager who is in advanced classes and on the A/B honor Roll.
Meet Nakia F.
Nakia is now 17yrs old, we were told she wouldn't live past the age of 4 but God had other plans. These last 2-3 years have been rough for Nakia, and our family but we always Pray and press forward. In June of 2014 she had her right leg amputated, this was a very hard decision for me to make but I knew it was best for her, and she has been doing great with it, and she experienced no pain once we left the hospital, nor required pain medications. This past year she has been having some breathing issues, and is now on a cpap to help her breathe, because she takes long pauses and stops breathing. This was yet another hard thing for our family but we have managed thus far. The only option left if this doesn’t work is a tracheotomy, which we don't want, but whatever is necessary we will do. Our latest issue has been seizures, which she started having about 2yrs ago. The doctors think she may have recently started having staring seizures, so I am constantly watching her. It's all scary but I know God gave her to me for a reason and He will take care of her.
Meet Nathan F.
Nate was born with a genetic condition called Mitochondrial Disease, a multi-systemic disease resulting in organ dysfunction, Nate has been a patient of UF Health Shands Children's Hospital since his birth. His 9 pediatric specialists at Shands ensure that Nate can live a fairly normal life despite relying heavily on medical equipment and medications to keep his body functioning properly. Because of his amazing medical team and donations to Children's Miracle Network Hospitals, Nate is an energetic and joyful kid who loves attending school and hanging out with his Dance Marathon at UF friends.
Meet Nathan W.
When our son, Nathan, was ten months old, he underwent open-heart surgery. As first-time parents we were scared to death. Nathan was diagnosed with Tetrology of Fallot. His surgery required the repair of a tiny hole with a man made patch. This sounds so easy, however, he had a month-long stay at Shands Hospital because he had a few complications and his heart had to get used to the repair. My family and I are so grateful for his repair, the Shand’s Cardiology Team, surgeons Dr. Claudell and Dr. Alexander, his cardiologist Dr. Fricker and the team of nurses who took care of him. When it comes to the Cogenital Heart Center at UF, dreams can come true. Nathan’s surgery was at ten months old and he is now twelve and growing in leaps and bounds, enjoying life. Nathan is well rounded and thriving. He is certainly a “miracle”. Nathan attends regular follow-ups with his cardiologist, Dr. Chandran, who has been with every step of the way and nurse Connie. Both excellent in their professions. With these wonderful people in Nathan’s corner, he will be able to live his life, making great strides, and with the peace of mind that Cardiology is there if he ever should need them. He is the type of kid who doesn’t let his diagnoses define him. He loves life and enjoys being in the group. Ever since Nathan was old enough to swim, he hit the pool, loving his lessons and swimming. He has come a long way as a heart survivor. I do not feel that, “Thanks”, was said enough to the generous staff and nurses, “The Team,” THANK YOU!
Meet Nick M.
Nick was diagnosed with hypertrophic cardiomyopathy when he was 2 years old. Up until age 10, he simply took a daily medication to help his heart beat slowly and easily and lived life like any other boy. That changed in the summer of 2012 when Nick, underwent a cardiac MRI to evaluate the size of his heart and its structures.Our family moved to Gainesville from Ohio in December 2011 for Jodi’s job. At that point, Nick started receiving his heart care from Dr. Jay Fricker at the Congenital Heart Center. Dr. Fricker wanted Nick to have an MRI of his heart. Nick had never had a cardiac MRI before because it really was not available at our previous hospital. The MRI results showed that Nick’s heart size put him at risk for developing a sudden and potentially fatal heart rhythm. We saw an electrophysiologist, Dr. Randall Bryant, who comes from Jacksonville to Gainesville regularly to see patients. Dr. Bryant recommended that Nick have an internal defibrillator placed under his skin with tiny wires attached to his heart so that any life threatening heart rhythm could be shocked back to normal a rhythm if necessary. Because of Nick’s hypertrophic cardiomyopathy he has regular visits with Dr. Fricker and Dr. Bryant. He has had one cardiac MRI and regularly gets heart echo tests and 12-lead EKG tests. He has also had blood work performed to identify a possible genetic cause for his heart condition. In September 2012 Nick had surgery at Shands for placement of an internal defibrillator. He spent one night on unit 44 pediatrics. Nick’s brain condition, agenesis of the corpus callosum, is stable, and he has now mastered all of his developmental milestones to this point. He does get extra help at school and has an IEP because of his learning challenges. Nick has been a patient in the neurology and pediatric neuropsychology clinics at UF Health Shands Children’s Hospital to help manage his needs related to his brain condition. He also saw the geneticists in that clinic to help establish whether his heart condition has a genetic cause. Nick remains a very social and positive guy. He tries his best despite his obstacles. Because of his heart condition, he is not allowed to participate in moderately-intense sports like baseball, soccer or basketball. This makes Nick sad because he loves to play sports, especially basketball, and is pretty good at throwing a ball. Nick is, however, allowed to participate in the sport of bowling. After being off bowling for nearly 8 weeks to allow his defibrillator surgical site to heal, he got back into the “swing of things!” Nick bowls every Saturday with a Gainesville youth league and participates in 1-2 tournaments each year throughout the state of Florida. In 2015 Nick placed high enough in a tournament to earn $115 in scholarship money! Nick is proud to be a Children’s Miracle Network ambassador! He wants to help other kids and support the hospital that saved his life. Nick particularly enjoys being involved with Dance Marathon at the University of Florida. He has met so many amazing college students who dedicate their time and energy to raising money for Children’s Miracle Network. Nick loves to hang out with the “big kids” and they treat him like a rock star!
Meet Owen M.
Owen was born at Monroe in Ocala, Florida on June l0th, 20l3 with a congenital heart defect called Transposition of the Great Arteries. In Transposition of the Great Arteries the Aorta and Pulmonary arteries are formed on the incorrect atriums which does not allow for blood to get oxygenated and returned to the body. Owen was born BLUE. He was immediately placed on a ventilator and a TON of life saving IV’s, pumps and equipment. He was transported within minutes by ShandsCair to UF Health Shands Hospital. He had his first surgery at just 6 hours old, a Septostomy performed by Dr. Fudge to help sustain him until he was stable enough for open heart surgery to switch the Aorta and Pulmonary arteries. When Owen was just 2 weeks old Dr. Bleiweis did open Heart Surgery...an operation called the Arterial Switch. He came home for the first time when he was 2 months old. Currently, he’s a thriving 2 year old. Other then the zipper scar down his chest...you would never know what this little boy has been through...He’s the true definition of a warrior and certainly lives up to the meaning of his name little fighter.
Meet Randy G.
When Randy was born, he had no clotting factors and had to have an open liver biopsy at 2 weeks of age, he was diagnosed with idiopathic neonatal giant cell hepatitis. They gave him 5 days to live and put him as a status 1 on the transplant list for a new liver. 5 days later he was dropped to a status 2 and given 7 more days. Mid-week he developed 2 infections and was dropped from the registry. At this point hospice became involved and the doctors worked towards sending him home to pass there because we didn’t want it to happen at the hospital. The day before he was to come home we got the call that a liver had become available for another patient at the hospital and that it was too big. So if they were able to successfully separate it then he could get the other half. At 28 days of age, and after 8 hours of surgery, randy received a liver transplant. That was 16 years ago. Now he is a thriving high school student at Bucholz High School and planning to play basketball next year. We weren’t even promised 5 years yet we have celebrated over 16.
Meet Reagan M.
Reagan was born with Tetrology of Fallot, a heart defect. Her parents knew about the heart defect prior to her birth thanks to Dr. Covu and they were very well prepared on what to expect. She had her first surgery when she was 10 days old and another surgery at 9 months old, both were performed by Dr. Bleiwise is at Shands. She will eventually need a new pulmonary valve as well and she will need lifelong cardiology follow up. Reagan is a very healthy and happy 3 year old!
Meet Reilly R.
Reilly's story started when I had my anatomy scan at 20 weeks pregnant. The OB spotted a "blip" on Reilly's heart and then referred us to UF Shands to get an Echo on Reilly's heart. There, Dr. Gregg performed the Echo and indeed told us Reilly had a CHD called Hypoplastic Left Heart Syndrome and tried to explain what that meant while showing us on the screen. After he explained our options, we told him we would do whatever it takes to save Reilly's life. He suggested an Amniocentesis test to rule out Dijorge Syndrome, and various other syndromes that can piggyback with this condition. We agreed to do it. Turns out he had perfect chromosomes and the only battle we were facing was the HLHS. So at 22 weeks gestation we knew about Reilly's CHD. We went forth throughout the pregnancy visiting the Peds Cardiologist Dr. Co-Vu, bi-weekly to stay on top of how his heart was growing. We opted to schedule Reilly's arrival via C-section and at 38 weeks gestation. This was extremely scary since my first 2 children were natural with no complications. Even the week before Reilly arrived, the Cardiologist knew that he was going to need to go to the Heart cath lab immediately after birth and get the balloon plasty. When Reilly was born, he was breathing at 50% oxygen and suffered 2 strokes right before birth. So as we knew they would, they took him to the heart cath lab, performed the procedure and then he went to the NICU for 2 days. There, they performed Neuro activity monitoring and MRI on his brain as well as Echo's. Once he was stable as a newborn 2 days (and 3 dozen Krispy Kreme donuts) later, he went to the PCICU to be monitored before his Norwood heart surgery. He had the surgery at 11 days old by Dr. Bleiweis. A very talented miracle worker in my eyes. Reilly did great during surgery and continued to heal perfectly. We spent the remainder of Reilly's first 30 days in the PCICU and were discharged 1 month after his birth. Just 5 weeks later, Reilly had a choking incident where he choked on his saliva and we called 911. After we reached UF Shands PCICU they tested his heart and everything else which they found he had RSV (no symptoms at home because he had just gotten it). They caught that early and treated. We were discharged after a week. After that we spent his first Holidays at home and he did very well from then on. He was going to PT and OT as well as Neurological visits. At that point he was testing only 10 days behind! We were informed that seizures will always be high risk due to his strokes at birth. We have been fortunate not to battle that yet. Reilly's next surgery, the Glenn was performed when he was 5 months old. They also discovered Reilly had a leaky valve too close to the coronary arteries to fix during the second surgery, and also Reilly's heat function was not as good as it should've been. But we continued through the Glenn surgery hoping his function would improve after. He did so well during and after surgery, they discharged us 7 days after surgery. Since then he has developed perfectly, passing all hearing tests and his heart function even improving with the change of some meds. Now he is 8months old, rolls around, eats baby food and tries to sit up on his own.
Meet Ryan T.
Ryan is about 7 1/2 yrs old now. He was diagnosed in utero with a brain condition called Schizencephaly. His brain condition is basically like he had a stroke in utero and his brain didn't fully develop. His Schizencephaly has contributed to his other health issues. He has septo-optic displaysia, optic nerve hypoplaysia, right sides weakness, gastroparesis, dismotility of the intestines, diabetes insipidus. He was considered a failure to thrive until he was about 4 years old but is doing so much better now that we have figured out an effective way of feeding him through his intestines. He is developmentally delayed but just finished 1st grade. He started walking around 4-5 years old and is now able to run around but still falls cause of his weakness on the right side. He is a pretty happy boy most of the time except when his brothers are irritating him!
Meet Sage P.
Born with a congenital heart defect called Hypo Plastic Left Heart Syndrome, Sage has spent much of his 9 years of life enduring countless hospital stays, multiple open heart surgeries and other medical procedures. UF Health Shands Children's Hospital has become our home away from home at various times for Sage and so many other children. In spite of his medical condition, we strive to maintain a “normal” life. Sage loves to play baseball and his dream is to play for the Gators when he attends college. He also enjoys riding his dirt bike and playing basketball. In addition, he is an honor roll student going into 4th grade. His favorite subject is Math. Our family feels honored and privileged to be in our 7th year as a Children’s Miracle Network and Dance Marathon ambassador family.
Meet Sam N.
Samuel’s parents knew he was a fighter long before his birth. After a very complex pregnancy, Samuel was delivered at full term and weighed 8lbs, the picture of normal physical development... except he was not breathing. Life-saving efforts in the NICU stabilized him but with the limited resources of his small local hospital, his parents had many questions on the mounting unexplained health issues. He experienced an acute life threatening event and was resuscitated only to be sent home on a monitor the next day only leading to a terrifying week. Samueal was ambulanced to the nearest children’s hospital for severe bradycardic episodes and respiratory distress.The months to follow were spent in and out of several hospital ICUs with extensive testing and numerous surgeries. Teams of physicians tried to discern the source of his multi-systemic health concerns: encephalopathy, global developmental delay, tracheomalacia, seizures, Gastro- Intestinal dysmotility and paresis, hypotonia, oromotor dysfunction, apnea, bradycardia, respiratory insufficiency, and failing to thrive on a GJ feeding tube.. While being told to expect that he might never walk, talk or live a normal life, his parents continued to fight for answers. One difficult surgical muscle biopsy results revealed what was threatening their son’s life. Samuel is fighting a mitochondrial disease. The mitochondria are the part of every cell responsible for creating 90% of the energy our organs need to function. When his body is compromised by stress or illness, cell injury and cell death follow. This condition is considered degenerative and progressive and he has fought through very difficult metabolic declines following typical stressors, such as a warm ride in the stroller or even a simple ear infection. Samuel has this disease, but it does not have him. He has shown incredible strength and determination, defying all the odds and reaching milestones with much effort, therapy and support. He continues to amaze and inspire all those around him. If it were not for the care and support, treatments and interventions provided by UF Health Shands, Samuel might not be here today, showing us all how to manage challenging circumstances and appreciate life. Thank you for making a difference in the life of a child through the Children’s Miracle Network Dance Marathon,he results of your heartfelt efforts are made tangible by the smiles that illuminate our children’s faces despite what they endure. Just like the dancing spirit on that gymnasium floor, your spirit fills their hearts with joy and appreciation. Thank you for sharing this dance with them.
Meet Tori B.
Tori was diagnosed with High Risk Infant B-Cell ALL with the MLL R Gene (9:11), She is in remission! we will continue chemo till around 8/29/16 Tori was put on a 2 year treatment plan and she will be monitored very close for 5 years after that!
Meet Tyler B.
We learned that Tyler had a cleft several months before he was born. We saw the craniofacial team, who helped prepare us for his birth and what challenges we may face afterwards There was a team of specialists present when he was born. He had surgery at three months, and was readmitted a few days later with complications. After a challenging recovery, he regained his strength and grew to be the sweet, lovable 7-year-old boy he is now. He loves Children’s Miracle Network and UF Health Shands Children’s Hospital because, as he says, they ’sewed him a new smile’. We continue to see the craniofacial team at Shands and benefit from the incredible team there!
Meet Veronica D.
Veronica has always been a very happy kid. She had a strong pain in her back which brought her and her family to Shands. She was diagnosed with B Acute Lymphoblastic Leukemia and still undergoes treatment.
Meet William C.
William was 15 months old when he had his first pediatric cardiology appointment at the UF Health Congenital Heart Center. He spent most of the first year of his life sick – reflux, congestion, extreme eczema, repeated respiratory infections, including pneumonia at 8 months old, which landed him in our local hospital for a week. When William was 11 months old, he was hospitalized again — this time with rotavirus. It was during that hospital stay that his new doctor diagnosed William with Scimitar Syndrome, after he had received a chest CT scan done to rule out a possible respiratory infection. Scimitar Syndrome is a birth defect that adversely affects the right lung and right side of the heart. In June 2006, when William was 2, he underwent his first open-heart surgery. Life ran smoothly until August 2012, when Dr. Fricker noticed the slightest change in William’s heart. William had a cardiac MRI and then underwent his second cardiac catheterization. The MRI and cath showed that William had a blockage in his scimitar vein and had developed pulmonary hypertension. Five days before Christmas in 2012, when William was 8, he underwent his second open-heart surgery with Dr. Bleiweis. Since then, we have cardiology and pulmonary checkups every 6 months. In February 2014, Dr. Fricker noticed that William’s pulmonary pressures were creeping up again. In May 2014, William underwent his third cardiac cath. During the 8-hour procedure, they were able to balloon open William’s scimitar vein and his inferior vena cava, both of which were blocked. The angioplasty procedure saved William from another immediate open-heart surgery. He will need more interventions in the future, but he’s doing very well right now. He plays flag football and has been able to keep up with his friends much better than before his interventional cath. William has had so many “best days of his life”, a few of which were made possible by Children’s Miracle Network. Some of his other “best days” include being able to get out on the field and play flag football like all of his friends, and going to amusement parks and being able to ride whatever he wants to ride. He’s a happy kid who enjoys being active, playing football with his friends, hanging out with his older brother, Martin, and just being a regular kid. The level of care available at UF Health Shands Children’s Hospital and the UF Health Congenital Heart Center has meant my son’s life. He would not be the active, healthy, smart-aleck, energetic kid he is without them. It’s quite possible that without UF Health Shand’s care, he wouldn’t be here at all. UF Health Shands Children’s Hospital is a magical place, and Children’s Miracle Network is a huge part of that magic.
Meet Wila A.
Willa is a sweet, caring, loving 8 year old girl. She was diagnosed when she was 18 months with Polyarticular Juvenile Idiopathic Arthritis. Since her diagnosis she has developed tenosynovitis in her hands and enthesitis in her heels. She has infusions every 4-5 weeks of a biologic drug called Actemra (at Shands pediatric infusion room), and weekly chemo pills called Methotrexate. She is a true warrior of this disease. She takes it in stride, and most days you wouldn't know she is battling pain. She was in a wheelchair toward the end of the last school year, as her feet bothered her daily. I hesitantly signed her up for ballet a few months ago, not knowing if she would be able to attend due to her pain. Since starting ballet, within 2 weeks, she was out of the wheelchair and has not flared up once! What I thought was going to be a struggle turned out to be the best thing for her. She is now going to ballet twice a week and loving every minute!
Meet Wyatt T.
Wyatt was born with five major heart defects that eventually led to complete heart failure. At 2 months old he had to be placed on the Berlin Heart (mechanical heart) to help sustain him until a donor heart became available. After 217 long days Wyatt received his gift of life. After a total of 276 days ,at the age of 10 and a half months, we were finally able to bring our miracle baby home. He hit the floor running and has not stopped yet.
Meet Zander W.
When Zander was born, he was born at a hospital that didn't have a NICU, so he had to be transported to a hospital that did, because shortly after birth, he turned blue. When he got to the other hospital, the pediatric cardiologist just happened to be on the floor looking in on another patient. He saw Zander and called for an echocardiogram. Once the test was done, he told the hospital that Zander needed sent to Shands. Zander was born at 2:03 PM on November 29, 2006, and arrived at Shands at 10:30 PM that same day. Zander got to ride in an airplane when he was only a handful of hours old. Zander was diagnosed with Transposition of The Greater Vessels (TOGV). A normal heart makes a figure eight, whereas Zander's heart made two individual circles. When he was a day old, doctors performed two heart Caths because they wanted to give him a fighting chance for surgery. The goal of the heart Caths was to help Zander’s heart mix his blood while it was inside the heart. When he was six days old on December 5, 2006, Zander had his open-heart surgery for TOGV. The doctors had to take the two top ventricles of his heart, off switch them, and then reattach them to his heart in the right spots. Then, they had to reattach the arteries to the ventricles. They left his chest cavity open while he healed until he was 10 or 11 days old, at which point they closed the chest cavity. Zander got discharged from Shands on December 18, 2006. On December 30, 2006, Zander had surgery for Pyloric Stenosis. The “Pyloric” sphincter joins your stomach and large intestine. “Stenosis” signifies that the sphincter muscle was constricted. Zander was lucky enough that the doctors were able to use the incisions from the chest tubes to do the stomach surgery. They had to put a camera in to see where they needed to cut on the muscle around the Pyloric so that Zander would be able to eat (or in his case, drink) and not regurgitate shortly afterwards. When Zander was 4-months-old, I took him for his four-month check-up. His pediatrician was immediately alarmed; he didn't even say anything to me. He just kept feeling Zander's head all over. Then, he just kept looking from me to Zander. Until I said, “You can't tell me that anything is wrong – Zander has to finally going to be able to do tummy time,” the doctor said, “I hope I'm wrong, but I'm going to send him for a CAT Scan.” When Zander was 4-and-a-half-months-old, he had head surgery for Craniosynostosis. His Sagittal Suture (front soft spot) had closed somewhere between birth and four months. The doctors made two small incisions on his head (one on the front and one on the back) to insert a man-made soft spot so that his brain would have room to grow. When Zander was 5-and-a-half-months-old, he got a special helmet to shape and protect his head. We called it his “Buzz Lightyear” helmet. He had the helmet until right after his second birthday. In April 2012, Zander got his first set of tubes in his ears for repeated ear infections. On November 20, 2012, Zander had a second head surgery for his Craniosynostosis to fill in the man-made soft spot. This was a week before his 6th birthday. In January 2014, Zander was diagnosed with neuropathy/myopathy, or unexplained leg pain. He hurts after a short distance when walking. He has a wheelchair for long distance travel. Even though he is in pain, he will run around and play with his friends, or breakdance to his heart’s content. Zander always tells his doctors, “You can't tell me what I can or can't do. I am going to do what I want because I want to!” He is very resilient. In August 2014, Zander had a second set of tubes put in his ears, and in November 2015, he had a third set of tubes put in his ears. Zander has ADHD, a form of Dyslexia, and food allergies, as well as seasonal allergies, asthma, Acid reflux and Gas reflux (which means he is in a small percentage of humans who take natural gulps of air during the day), the neuropathy/myopathy, restless leg syndrome, and the repeat ear infections. With all that he has against him, he is one of the strongest, smartest, and loving individuals that you will ever meet. He can brighten any room with just a smile. He loves to dance, run, and play!