For The Families
Dance Marathon at the University of Florida is very fortunate to have over 77 Miracle Families. Our Miracle Families are true inspirations and the pinnacle of what Dance Marathon stands for. The birthday parties, end-of-chemotherapy parties, and play dates that we have with the children constantly remind us of the true meaning behind “For All The Right Reasons.” The entire team at Dance Marathon is honored and privileged to have these amazing families attend Dance Marathon every year and support our students.
If you have any questions about the Family Relations program, or would like to become a Dance Marathon Miracle Family, please contact the Family Relations Overall Director, Scotty Trethewey, at email@example.com
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 Adrienne W.
Adrienne Williams was born a healthy 8 pounds and 2 ounces in Ohio. She had been examined prior to birth because of her brother’s heart defect, and all seemed well. Little did her family know her issues would be completely different from her brother’s, but just as difficult. Adrienne was diagnosed with hydrocephalus and Arnold Chiari type 1. In 2007, she had a VP Shunt put in and in 2008, her first posterior fossa decompression. In 2010, Adrienne had her second posterior fossa decompression. In between her posterior fossa decompressions, she had a mic-key put in. Adrienne has always enjoyed life and is happy, stays active, and is gifted in academics.
Meet Alyssa M.
Alyssa was born at 26 weeks, weighing 1 pound and 4 ounces. Her parents were told she would not live through the night, but she did. She continued to surprise the doctors by fighting to live. Next, her parents were told she would never walk, talk, eat, or interact with them. Due to her premature birth, she developed hydrocephalus, which means there was too much fluid in her brain. Because of this, she has a shunt, cerebral palsy, a cochlear implant, and other medical issues for which she needs continuous monitoring and treatment. Today, she is 22 years old and eats what her parents eat - with a few modifications. Alyssa can hear with her cochlear implant but mainly relies on sign language to communicate. Walking is a challenge, but she does it with the help of a walker and many years of physical therapy. Once she gets to know them, her interaction with friends and family is outstanding. She has an awesome personality and loves to ride horses and swim. She also loves to watch movies, football, baseball, basketball and tennis. She also loves being an ambassador for the Children’s Miracle Network and Dance Marathon at UF.
Meet Annabelle D.
In August of 2017, Annabelle Dykes was diagnosed with acute lymphoblastic leukemia at 15 months old. Annabelle’s family knew that having Down syndrome could increase her chances of having leukemia, but they never expected it to become their reality. The night that Annabelle was diagnosed, the doctors wanted to send her family to a different children’s hospital in Georgia, where her family is from. However, Annabelle’s family knew right away that UF Health Shands Children’s Hospital was where they needed to go and immediately demanded the doctors contact the oncologist there. Annabelle’s family wanted the best, so they chose the best. The best is what they were given. Just a few days after Annabelle’s family arrived at Shands Children’s Hospital, Annabelle had a port surgically placed in her chest. While she was in the operating room, the doctors did a bone marrow biopsy to confirm which type of leukemia she had, and they did a spinal tap, putting chemo in her spine. She went straight into her first round of treatment, getting IV and spinal chemo therapies weekly - making Shands her family’s home for 35 days. At the end of that first round of treatment, they performed another bone marrow biopsy and discovered that Annabelle had achieved remission. Being well enough to go home, she received her second round of treatment in an outpatient setting, getting IV and spinal chemo therapies weekly. Annabelle is now 4 years old and officially complete with treatment for cancer! Although she will need to be monitored with routine labs and checks and her immune system remains very weak as a result of the chemo she received, she is able to be home with her family and to enjoy school. The level of care available at Shands Children’s Hospital has kept Annabelle’s family close. Her family was provided with everything they needed to make the hospital their home away from home during the worst of times. They received resources for both Annabelle and the rest of her family, including mental health counseling for parents, toys and movies to keep Annabelle entertained, fun activities to help keep their mind off the hard times, volunteer help when they needed a break, and all of the therapies Annabelle requires to stay active and thriving. Without these services, Shands Children’s Hospital wouldn’t be the amazing place that it is.
Meet Arden T.
When Arden Thornbury was only 3 months old, doctors told her parents that she needed a heart transplant. She was sent to UF Health Shands Children’s Hospital where she was put on a ventilator to help keep her alive until her new heart was ready. That machine was purchased with funds from Children’s Miracle Network Hospitals. After Arden received her transplant, her doctors learned that she had a rare and progressive disease, Leigh syndrome, which is a mitochondrial disease. Because her condition is complex, Arden visits Shands Children’s Hospital and Arnold Palmer Hospital for Children quite often and has seen the Miracle Balloon sticker on the medical equipment CMN has helped purchase. When Arden is at the hospital for long periods of time, CMN Hospitals help make her hospital stays a little brighter by supplying toys to the Cardiovascular Intensive Care Unit.
Meet Ayden M.
At 3 years old, Ayden Morgan was diagnosed with a rare inoperable brain tumor called pilocytic astrocytoma with glioma blast. He lost his vision at age 3 and had a total of 17 surgeries and many treatments within his first year at Shands. His family and he have traveled to St. Judes Hospital in Memphis, Tennessee, where they lived for eight months while Ayden received treatments along with two more surgeries. Upon returning from Memphis, Ayden now receives treatment at Arnold Palmer Hospital in Orlando, another CMN hospital. Ayden just underwent his 21st surgery. He is undergoing active chemotherapy treatment now and will continue that treatment for years and years to come. Unlike most kids, Ayden will receive treatment into his 30's or longer, and he will never be in remission or cancer-free unless a true miracle happens. Because of CMN hospitals, Ayden is alive today! The Morgan family is truly thankful for all CMN does for kids and that these hospitals always keep fighting to help the next one.
Meet Bailey A.
Bailey Abbott was born in Central Florida with Turner syndrome, a rare chromosome disorder that occurs when a female child is missing an X chromosome. Turner syndrome occurs in 1 in every 2,000 live female births, but even more remarkably, only 2% of children conceived with Turner syndrome survive to birth. From the moment Bailey was born, she was already a true miracle! Turner syndrome can cause conditions that include heart and kidney defects, hearing or eyesight problems, short stature, swollen hands and feet, scoliosis, learning disabilities and even infertility. When Bailey was just 2 weeks old, she received heart surgery to correct a birth defect on her aorta, a common problem for girls born with her condition. Bailey visits the UF Health Turner Syndrome Clinic every four months, where she is seen by many specialists, including endocrinologists to monitor her growth, cardiologists for an electrocardiogram and other tests and psychologists for education consults and dentists as needed. Because girls with Turner syndrome often have problems with short stature, Bailey started daily injections of growth hormones when she was 2 and will continue to receive them until puberty. Bailey was also born with only one kidney, which is monitored closely by her nephrology team at UF Health. When Bailey was born, her parents were stunned by the diagnosis, having never heard of Turner syndrome before, and could only find scant information on the internet. The family was referred to UF Health Shands Children’s Hospital because of the breadth of care available from the Turner syndrome specialists. Without the incredible care available at UF Health Shands Children’s Hospital, Bailey’s family says they do not know where they would be today. People quickly learn that Bailey is just an active 10 year old that is not defined by her diagnosis. She has a bright, bubbly personality that touches lives everywhere she goes. Bailey loves American Girl dolls, playing basketball and her kitten Gracie. Bailey’s family continues to spread awareness of Turner syndrome by hosting Bailey’s Butterflies for Turner Syndrome walks annually and reaching out to other families affected with Turner syndrome. Her family is forever grateful to Children’s Miracle Network Hospitals and UF Health Shands Children’s Hospital for the incredible care Bailey has been able to receive!
Meet Bailey W.
Everything appeared normal when Bailey Winckler was born. She was kept in the hospital because she had jaundice. Five days into her hospital stay, she turned a little blueish during a feeding. The doctors took an X-ray, and the adventure began. Over the years, Bailey has had around 20 surgeries for different issues. She had holes in her diaphragm, a hole in her heart, reflux that needed two surgeries to fix, ear surgeries, eye surgery, and more. Bailey also has learning disabilities. For 10 years, doctors tried to figure out how all of these things went together and could not. Then, a geneticist found it. Bailey has a rare genetic mutation called Kabuki syndrome. Bailey functions on her own. She sings, dances, rides her motorized scooter, and plays drums. She also loves hockey and race cars, and she has been to several local race tracks and has attended baseball and hockey games in both Tampa and New York. Bailey is very outgoing and can take over an event in minutes. Bailey looks forward to Dance Marathon at UF every year. Bailey is the best thing to ever happen to her family, and they always wonder what's coming next.
Meet Beckett G.
Beckett Genuardi was born on October 12, 2014. Once he came home, his parents always worried about his breathing. On December 22, 2014, his parents brought him to the ER thinking he had a minor infection. Their local hospital quickly admitted him and soon after he went into respiratory distress. He was diagnosed with dilated cardiomyopathy. On Christmas Eve, he was transferred to UF Health Shands Children’s Hospital. Beckett received the Berlin heart on January 5, 2015 and received a heart transplant only 10 days later. Beckett is now a happy 5 year old and loves spending time with his sweet sister Harper.
Meet Bennett J.
Bennett Jefferson is missing his right ventricle and tricuspid valve. The written diagnosis is a technical, wordy paragraph. Some doctors say tricuspid atresia and others say hypoplastic right heart syndrome. In short, he is a single ventricle patient, which means he only has half of a heart but twice the fight! In December 2013, Bennett had his first open-heart surgery at 3 months old. The doctors at UF Health Shands Children’s Hospital performed a bilateral bi-directional Glenn procedure, in which the doctors placed a band around his pulmonary artery and connected both of his inferior vena cavas to his pulmonary artery. The doctors believe that Bennett having the two inferior vena cavas is what kept him stable for three months, while most babies with his condition require surgery at around 7 days old. In July 2017, just before he turned 4 years old, Bennett had his second open-heart surgery. The procedure was called the Fontan procedure; the doctors connected his superior vena cava to his pulmonary artery. Since the pressure in Bennett’s heart changed with this procedure, they also removed the band around his pulmonary artery. This procedure is the final repair for his type of defect. If Bennett ever goes into heart failure, the only solution would be a heart transplant. For now, the Jefferson family tries their best to enjoy every day and not take anything for granted. Bennett just finished playing basketball last spring, which was his first time playing in a recreational league, and he started first grade this fall. He loves superheroes, and he especially loves spending time with his big brother Tre. They both enjoy swimming and playing on their electronics. We are so thankful for the work of Dance Marathon at UF and for the amazing medical team at UF Health Shands Children’s Hospital!
Meet Camden A.
When Camden Ayres was born on Father’s Day in 2011, his family quickly learned that everything was not as they expected. Due to a severe congenital heart defect called Tetralogy of Fallot with pulmonary atresia, Camden was sent by air ambulance from Fort Walton Beach to the UF Health Shands Children’s Hospital. After several weeks, his family learned that his heart defect was caused by a genetic syndrome called DiGeorge syndrome. Camden has since endured two major open-heart surgeries, two major abdominal surgeries, six heart catheterizations, and countless other procedures requiring anesthesia. After Camden suffered from complications from his second open-heart surgery, which led to right-sided heart failure, he spent five days on the most advanced and risky form of life support possible called ExtraCorporeal Membrane Oxygenation (ECMO). While on ECMO, Camden suffered a very severe and debilitating brain bleed, causing him to lose 95% of his motor skills. One year later, Camden came down with RSV, and his heart failure became worse. At this point, Camden’s family was told that he would likely pass before he turned three. Camden clearly did not agree with that prognosis, and he is now eight years old and still going strong! Camden’s family is happy to report that Camden is regaining some of his mobility through extensive physical and occupational therapy, though he will likely never walk or talk. In addition to PT and OT, Camden works with speech and vision therapists to evaluate his progress and to help Camden acquire a communication device in the hopes that one day he will tell his own story at CMN events!
Meet Claire E.
Claire Essex was born at UF Health Shands Children’s Hospital and stayed in the NICU for 64 days. During that time, her family met with the specialists in Pediatrics and really liked everyone. During her stay, the doctors helped Claire fight off methicillin-resistant staphylococcus aureus (MRSA) in her eye and gave her family confidence in their medical team. Claire has been seen by and received care from many UF Health pediatric specialists, including genetics, GI/nutrition (G-tube fed), audiology (hearing aids), physical and occupational therapy, dentistry, ENT (ear, nose, and throat), and surgery. Shands Children’s Hospital is special to Claire’s family!
Meet Courtney H.
In February 2013, Courtney Holcomb was diagnosed with stage 5 retinoblastoma in her right eye. 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 Early was born in May 2015 in Jacksonville, Florida. Dani-Lynn is diagnosed with congenital heart disease, with a combined 3 different defects. She has hypoplastic left heart syndrome (HLHS), ventricular septal defect, and partially anomalous pulmonary return. She has undergone two of the three HLHS surgeries. She is currently listed on the heart transplant list. Dani-Lynn enjoys Disney, pageants, and playing with her two older sisters.
Meet Elizabeth C.
Elizabeth Chapman is diagnosed with untyped Glycogen storage disease (GSD). When she was 6, Elie was brought to the Pediatric Emergency Room at UF Health Shands Children’s Hospital after vomiting over 30 times. At the hospital, the doctors discovered that her blood sugar level was at 42, and she had a seizure. Elie’s family was referred to Dr. Weinstein, a world-renowned doctor for GSD, at Shands Children’s Hospital. Elie’s family 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 this condition, Elie can check her own blood sugar and ketones by pricking her finger when she is not feeling well. She has to snack very often and drink a protein supplement three times per day in order to maintain her blood sugar and prevent muscle breakdown, which causes severe cramping. Because of GSD, Elie sometimes has to go to the hospital to get special IV fluids, which takes Elie longer to recover from than a typical fever or illness. Today, Elie is 12 years old and brings so much joy to our DM family!
Meet Elijah G.
On March 31, 2016, Elijah Gonzales was born at UF Health Shands Children’s Hospital after 39 weeks and six days of what seemed to be a picture-perfect pregnancy. At only 30 minutes old, he was taken to the NICU due to low oxygen saturation levels. He ended up staying nine nights in the NICU due to an array of problems, including his oxygen levels dropping, random drops in his heart rate, low central tone, and difficulty feeding. Eli was eventually sent home with an apnea and bradycardia, or an A/B, monitor, so his parents could continue monitoring his heart rate and oxygen levels at home. In Eli’s first year of life, he followed up with many specialists at UF Health Shands, including a developmental pediatrician, a neurologist, a neurosurgeon, a geneticist, a cardiologist, an otolaryngologist, and an ophthalmologist. Eli also had many tests performed, all of which came back within normal range, until his parents got the results from Whole Exome Sequencing only 8 days before his first birthday. On March 23, 2017, Eli’s geneticist notified his parents that Eli had been diagnosed with a rare genetic syndrome, called coffin-siris syndrome (CSS). At the time of his diagnosis, his parents were told that there were only 140 documented cases of CSS worldwide and that his syndrome would cause him to have global developmental delays. Since receiving his CSS diagnosis, Eli’s team of medical specialists at UF Health Shands has continued to grow, and now he is additionally followed by a urologist, a pulmonologist, an audiologist, and an endocrinologist. Eli has also had surgeries at UF Health Shands performed by an otolaryngologist, a urologist, and a neurosurgeon, and he continues to be closely monitored by the team. Eli received outpatient occupational and physical therapy at UF Health Rehab Center for Kids from 1 month old through 29 months of age; he is currently receiving intensive applied behavior analysis therapy and will start preschool in the fall. Eli’s family is thankful for CMN and DM at UF. During Eli’s hospital stays after surgeries and for overnight assessments, his parents have seen how the money raised is being utilized to access up-to-date equipment for his medical providers and to allow for toys, games, and specialists to keep the children happy and entertained. Eli’s family also loves attending all of the events hosted by CMN and DM, and some of their favorites are Moralloween and the big DM Event. Eli’s family wants to personally thank all of the volunteers and donors who make families like their’s feel loved and supported.
Meet Emily M.
Emily Monroe was born premature at 23 weeks and started life being blind in her right eye. Eventually, her family started to notice that she was having more trouble seeing and were concerned about the vision in her left eye. Doctors at UF Health Shands Children’s Hospital diagnosed her with uveitis. Despite her diagnosis, Emily is full of energy and loves the movie Frozen!
Meet Hannah S.
In 2004, Joel Strickland was diagnosed with cystinosis, and Hannah Strickland has since been diagnosed with cystinosis as well. Joel started his treatment at UF Health Shands Children’s Hospital when their family received the news that Joel’s underlying condition caused renal failure, and he would need a kidney transplant. There have been so many little blessings along Joel and Hannah’s recent journey amidst their trials. Child Life has been especially relevant to both Hannah and Joel. Their many specialists have genuinely touched Joel and Hannah’s family.
Meet Isaiah R.
Isaiah Richardson was his mother’s fourth child, so when labor began, they expected everything to be routine. Like Isaiah’s parents’ previous children, Isaiah was born in the birthing tub at The Birth Center of Gainesville. After a seemingly normal delivery, their baby boy was placed on his mother’s chest. The midwife and the mother immediately noticed that Isaiah was not crying or breathing normally. After he was evaluated, it was determined that it would be in the family’s best interest to transport Isaiah to Shands by ambulance. The response was amazing. When the Richardson family arrived at the hospital, they were met by Dr. Sandra Sullivan who advised that Isaiah appeared to have a bacterial infection due to meconium aspiration. However, she believed he should be released within a day or so. Isaiah’s father was starting a new job the next day, and three other children were at home. They were overwhelmed. The next morning, a social worker came to visit Isaiah’s mother. The social worker provided her 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 worsened. While his parents had finally left the hospital to get some rest, Dr. Sullivan called to advise them that they needed to get to the hospital as soon as possible. This was the worst phone call Isaiah’s parents had ever received. When his parents arrived, they were told that Isaiah also had a hole in his heart. The combination of the cardiac and respiratory issues were preventing adequate exchange to sustain life. Doctors wanted to put Isaiah on an extracorporeal membrane oxygenation machine. 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 stayed on the machine for six days. By this time, he had been in the hospital for two weeks, and his oxygen levels were finally improving. He was not able to be released until about two weeks later when Isaiah was able to breathe on his own, the oxygen level stayed consistent, and his blood pressure was controlled. At 5 weeks old, he was finally released. Today, Isaiah is a thriving 7 year old!
Meet Izabella N.
Izabella Neira and her twin sister Jesubelle were born 3 months premature in December 2011 at Memorial West Hospital in South Florida. At only 3 weeks old, Izabella had a pulmonary hemorrhage, meaning that she was bleeding out from her lungs. She was then transferred to a more critical hospital in South Florida where she was stabilized but was still in very critical condition. Izabella was eventually diagnosed with a very rare surfactant deficiency that prevented her lungs from functioning normally. Her condition was so rare it did not even have a name yet. A lung transplant would provide Izabella’s only chance at survival, but before she could be placed on the list, protocols called for a bronchoscopy, a procedure that was too risky for Izabella to endure, and therefore her parents rejected it. Doctors only gave Izabella a 7 month life expectancy. UF Health Shands Children’s Hospital was Izabella’s true savior. The UF Health Congenital Heart Center said that it did not need the risky procedure to put Izabella on the transplant list, and Izabella was transferred to UF Health Shands Children’s Hospital when she was 6 months old. Izabella remained in the PICU at UF Health Shands Children’s Hospital for 9 months until they got “the call.” Izabella received her transplant on January 27, 2013, 417 days after she was born. Izabella is the youngest patient in the Southeast to ever receive a double heart-lung transplant. On March 20, 2013, after 469 days, Izabella left the hospital for the first time in her life. Doctors told her parents that she would only have a life expectancy of about 7 months, and UF Health Shands Children’s Hospital kept her alive for double her life expectancy until she received the heart and lungs she needed to survive. Many of the machines that kept Izabella alive while she was on life support would not have been there if not for the support the Children’s Miracle Network provides to UF Health. Today, Izabella is a thriving 8 year old who loves gymnastics, swimming, and playing with her three sisters. Doctors didn’t think she would live, walk, talk, or eat normally, but she has continued to amaze them every single step of the way. Her family is endlessly grateful for everything that Children’s Miracle Network and UF Health Shands Children’s Hospital did to save their daughter.
Meet Jack M.
Jack Murray was born on June 2, 2001, in Tallahassee, Florida. He is one of five children, the only boy, with one older sister and three younger sisters. In May of 2012, when he was an 11 year old 6th grader, he was diagnosed with acute myeloid leukemia (AML). When Jack’s bloodwork came back not as leukemia, the pediatrician told the family to take him that very day to see Dr. Slayton at Shands Children’s Hospital. Their first few days were a blur of tests and meetings as they worked to define exactly what type and subtype of leukemia Jack had. They learned that instead of the more common ALL, Jack had AML. They also learned that it was in his spinal fluid as well. The treatment for Jack’s AML was four consecutive rounds of chemotherapy. The doctors told the Murray family that he would likely be at Shands for six months and that it would be unlikely that he could go home at all during that time. And so they 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 Shands 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 several sets of headsets! Through it all, Jack was amazing. He defied the odds, and he was able to return home for a couple of days in between some of the rounds! Hisfamily was extremely grateful 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 his family is so proud of him for holding on to that during his treatment! Jack has now graduated high school and attends college at UCF.
Meet Jada T.
In August 2018, Jada Turner was diagnosed with acute myeloid leukemia. On November 17, 2018, she underwent treatment and chemotherapy at UF Health Shands Children’s Hospital. Jada later received a bone marrow transplant and was released from the hospital on December 7th. Jada is now doing well back home in Valdosta, Georgia.
Meet Jenna R.
When Jenna Rogers was younger, she was very tiny and sick all of the time. Her doctor in Orlando discovered that she had a problem with her immune system. Jenna’s family came to UF Health Shands Children’s Hospital to see an immunologist and ended up needing a rheumatologist as well. Jenna received a diagnosis of common variable immunodeficiency. She receives monthly sub-Q IgG infusions at home for 2 hours at a time. Without the level of care at Shands Children’s Hospital and the funds provided by CMN, Jenna would not still be with her family. The transport vehicle that brought Jenna to Gainesville and every single piece of diagnostic equipment and pump used to give her medicine was provided by funds from Children’s Miracle Network. Jenna’s family loves CMN and wants to thank you for all the hard work that you do to raise funds for our children.
Meet Joel S.
In 2004, Joel Strickland was diagnosed with cystinosis, and Hannah Strcikland has since been diagnosed with cystinosis as well. Joel started his treatment at UF Health Shands Children’s Hospital when their family received the news that Joel’s underlying condition caused renal failure, and he would need a kidney transplant. There have been so many little blessings along Joel and Hannah’s recent journey amidst their trials. Child Life has been especially relevant to both Hannah and Joel. Their many specialists have genuinely touched Joel and Hannah’s family.
Meet Jude and Oliver S.
Jude and Oliver Sleeper were born on July 13, 2011, 14 weeks before their due date, at UF Health Shands Hospital. Jude weighed 1 pound and 15 1/2 ounces, and Oliver weighed 2 pounds and 1 ounce. They were immediately taken to the NICU to receive critical care. Oliver and Jude’s first beds were the giraffe beds, which allowed nurses and doctors to access them while providing an environment similar to the womb. Their undeveloped lungs were the biggest concern, and they were intubated and given surfactant treatment to help the lungs develop. They were also treated with antibiotics, phototherapy for jaundice, transfusions for anemia, and constantly monitored for common preemie problems, such as necrotizing enterocolitis (NEC) or brain bleeds, which fortunately, neither boy experienced. Jude made slow improvements on breathing, but Oliver suffered setbacks after initially being weaned down to CPAP machines. Oliver was diagnosed with patent ductus arteriosus (PDA) and required surgery to prevent oxygen rich blood from continuously flowing back to his lungs. This surgery took place when he was 3 weeks old and went very well with immediate improvement in Oliver’s lung development. After getting through the first month of life, both boys were much less critical, though still tiny, and remained at the NICU for two more months. Jude went home after 81 days, and Oliver went home on his 3 month birthday. Oliver’s PDA resulted in the diagnosis of early chronic lung disease, and he went home requiring supplemental oxygen for two more months. He has struggled with asthma since he was a toddler and had two short hospitalizations at 5 years old. Oliver is followed by pulmonary specialists at UF Health, and his asthma is well managed. Jude has had very little issues since he was a baby. On July 13, 2019, the boys will turn 8 years old. They are two incredibly energetic, bright boys. Oliver loves science, technology, animals, and sports. Jude loves history and is very interested in medicine and has called himself Dr. Jude since he was a toddler.
Meet Kaitlynn G.
At Kaitlynn Gonzalez’s mother’s 24 week ultrasound appointment, her family 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. Her mother had an emergency cesarean section, and she was brought into this world on April 30, 2015. As soon as Kaitlynn was born, she stopped breathing, and she was taken away from her mother right away. Thankfully, a doctor that was present for a "just in case" scenario was there. He performed a balloon septostomy, which put a hole in Kaitlynn’s heart to keep all of the blood flow the same. As soon as she was as stabilized as she could be, the doctors took her into the NICU to do everything else they could do to stabilize her. At two days old, Kaitlynn’s mother received a phone call from her husband saying that Kaitlynn has a blood clot in her leg and that they had two options. The first option was to amputate her leg. The second option was to give her a medication that would solve the blood clot, but it could also send blood rushing to her head and cause neurological damage. This was devastating news for the family. 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 the doctors attempted the procedure on her left leg, which was successful. On the same day, Kaitlynn received a blood transfusion. When their child was 3 days old, Kaitlynn’s parents got the news that on Monday the doctors were going to perform her surgery. She was not stabilizing the way that they were hoping. Kaitlynn had her arterial switch, which is the procedure to correct the transposition, at 5 days old. It was a complete success. She did very well during surgery and surprisingly, did not need extracorporeal membrane oxygenation (ECMO). A full 20 days after she was born, her mother was finally able to hold her daughter. After that, everything started to turn around. On March 27th, 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. Kaitlynn is now 5 years old and lights up any room with her bright smile and bubbly personality!
Meet Kaliah E.
Kaliah Edwards was a healthy 8 year old who loved playing various sports such as soccer, volleyball, track, and cheerleading. However, in July 2015, Kaliah woke up with swelling in different parts of her body and had difficulty swallowing due to neck swelling. Kaliah was then diagnosed with nephrotic syndrome. Kaliah had a kidney biopsy and scheduled weekly infusions to help control her edema. In November 2017, Kaliah had her port removed and replaced with a catheter the same day she stated dialysis. Today, Kaliah is 13 years old and thriving. The level of care at UF Health Shands Children’s Hospital has exceeded her family’s expectations. Everyone on the staff is thoughtful, supportive, and all around fabulous.
Meet Kendall L.
Kendall Lewis, aka “Miss K,” was born on June 2, 2011 after a planned repeat cesarean section and was transported to UF Health Shands Children’s Hospital within the first few hours of her life. Her family 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 stands for vertebrae, or spinal issues. Her L4 vertebrae is a hemi/half vertebrae, or wedge shaped. She has deformities of the sacral/coccyx and a tethered spinal cord. A stands for anal. She had a low imperforated anus, meaning she was born without the anal opening where it should have been. C stands for cardiac. She has Tetralogy of Fallot with pulmonary atresia (TOF/PA). The vein and valve that bring blood to one’s lungs from one’s heart was essentially non-existent. She has a number of other issues with her heart as well. T stands for trachea. She had a tracheoesophageal fistula with esophageal atresia, which signifies the E for esophageal. Simply put, Kendall had an abnormal connection between her trachea and her esophagus, and her esophagus wasn’t attached to her stomach. R stands for renal. She has a duplicated collection system on her right kidney. L stands for limb. Simply put, some people can be missing odd bones in their body for no reason. This is the only component that she doesn’t have. In addition to these issues, she also has some extensive pulmonary complications as well as immune system complications. Miss K had her first set of surgeries at 5 days old that included her first bowel reconstructive surgery and another to repair and reconnect her esophagus to her stomach. Her first open-heart surgery was at 26 days old. 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 every other week. In the spring of 2015, Kendall had a cardiac catheterization done to help the narrowing in her conduit that was occurring due to her immune system not liking the donor tissue. She was placed on another type of Infusion to help stop her body from rejecting her new heart conduit. It didn’t help, but it bought Kendall some time while she had to have a second bowel reconstructive surgery done. In the summer of 2016, at the age of 5, Kendall had to have her third open-heart surgery - sooner than planned. However, as she grows, new things are found. In the spring of 2018, her family found out that Kendall likely had a small stroke after her second open-heart surgery. While the MRI was done to rule out anything serious, it was found that she also has hemiplegic cerebral palsy. It is very minor, and she functions very highly with it. Kendall is followed by 10 specialty teams at UF Health Shands. It has been Kendall’s family’s home away from home since day one. The Lewis family loves the pediatric departments at UF Health Shands, and they are thankful for everything Shands has done for their family.
Meet Keyin T.
Due to his asthma, Keyin Thomas has had several ER visits and two hospitalizations. Keiyan’s asthma prevented him from participating in sports or outdoor activities that required running. He was referred by his pediatrician to UF Health Shands Children’s Hospital after several unsuccessful attempts to maintain his condition. Keyin was diagnosed with asthma at a very young age, and later, he was diagnosed with severe asthma. He has taken steroids, nebulizer, and inhaler treatments. After finally finding the right medication and dosage, Keyin has been able to play sports, including football and running track. Shands Children’s Hospital has given Keyin a positive outlook on life. Since being a patient at Shands, he has not been back to the ER or have been hospitalized.
Meet Kinsey B.
Kinsey Bogart was born premature and without complications on September 22, 2003. However, that would soon change. In March 2004, Kinsey's feet began to swell, and when her mother took her to the doctor, she had no idea that their world would change drastically. Blood work showed that her kidneys were not working properly. The doctor referred Kinsey’s family to UF Health Shands Children’s Hospital, and their journey began. Kinsey was admitted to the hospital on May 6, 2004, and she was there for 12 weeks. In that time, she was diagnosed with Atypical Hemolytic Uremic syndrome (AHUS), which is now believed to be a different complement disorder. Kinsey’s kidneys failed, and her liver and temperature regulation system stopped working. On the weekend of July 4th, Kinsey’s family was told to brace for the worst - there was nothing else the doctors could do. She was on dialysis, had a warming blanket to keep her temperature up, and had continuous blood transfusions to filter her blood. These machines kept her alive. Their first miracle was about to happen. Kinsey’s family and several others were in continuous prayer, and 24 hours later, things began to improve. Kinsey fully recovered except for her kidney function. She had a peritoneal catheter placed in her and went home on peritoneal dialysis. For 11 years, Kinsey had dialysis. Her heart function deteriorated and returned - again with prayer. Her bones became brittle, and she was diagnosed with Autism spectrum disorder and several learning disabilities. Along with dialysis, she had several infusions of albumin. Kinsey had another setback and was diagnosed with Idiopathic thrombocytopenic purpura (ITP), which forced her to go to the infusion center for platelet infusions. These are only a few of the things she went through in those 11 years. On October 5, 2015, the Bogart family was called and told that Kinsey would be getting her kidney transplant. She had previously been on both the kidney and heart transplant list, but with the increased function of her heart, she was taken off of that list. She received her new kidneys on October 6, 2015, and a new journey began. One without the 10 hours of dialysis every day. Her family was hopeful and looking forward to trying to live a somewhat normal life. The kidneys started working immediately, but because her bladder hadn’t had urine in it for 11 years, they had to give Kinsey a vesicostomy. She did well with a few complications, but earlier this year, her transplanted kidneys began to fail. There was no rejection, but the kidney just started to fibrous. Kinsey is currently back on dialysis and goes to Shands three times a week for four hours for each treatment. She is currently waiting as live donors are being screened for donation. Doctors are also going through past testing to re-diagnose her. With the advancements and new research in the last 15 years, the doctors have decided she doesn't have AHUS but a different complement disorder yet to be identified. Kinsey’s family feels blessed to be part of Children’s Miracle Network and Dance Marathon. It has completely changed their lives and helped them deal with things no family should have to. Their story continues, and they rest in the fact that Jesus has already won their battle. When we believe anything is possible, miracles happen.
Meet Kirstyn T.
In loving memory August 17, 2004 to April 16, 2018 “Love is a remarkable superpower” #KirstynStrong Kirstyn’s brother Cason now helps raise funds and awareness for CMN Hospitals through Dance Marathon at UF in honor of his sister.
Meet Lauren P.
On August 29, 2013, 8 year old Lauren Price and her family received the heartbreaking news that a tumor found on Lauren's knee was cancer. Lauren was diagnosed with osteosarcoma and began chemotherapy immediately at UF Health Shands Children’s Hospital. Though Lauren and her family were devastated to learn of the cancer, they knew that the doctors and nurses at Shands Children’s Hospital would do everything to ensure Lauren received the best treatment. The road for Lauren has not been easy. When the Price family discovered that the cancer went further down Lauren’s leg than originally anticipated, surgery was the only option. Lauren underwent rotoplasty surgery and was then fitted for a prosthesis for her right leg. The chemo treatment was brutal, but Lauren remained tough as always and proved that she was going to come out strong. Shands became a second home for Lauren and her family. Today, Lauren is an unstoppable, cancer-free, 15 year old who loves everything sports and outdoors. The funds from Dance Marathon at UF and CMN have helped Lauren and her family with chemotherapy and treatment during their time at Shands. Every day, Lauren lives out her motto of “staying tomboy tough.”
Meet Lauren R.
On the morning of April 24th 2018, Lauren Rood’s mother found a really hard spot on Lauren’s belly. She didn’t know what to think of it, so she laid her daughter down on the couch and realized there was a huge difference on either side of her belly. Lauren’s mother made the decision to bring her to daycare that morning. Her plan was to make a doctor’s appointment in order to figure out what was going on, and she was very concerned. At 8 am, she called her doctor’s office. The lines were busy, so she left several voicemails for someone to contact her. Unfortunately, no one called the mother back. Later that night when she got off of work, she showed Lauren’s father her belly. His first reaction was that they needed to bring her to the ER right away. They packed up the kids and drove straight to the hospital. An ultrasound revealed that Lauren had a large mass on her kidney. Doctor Lee referred the Rood family to UF Health Shands Children Hospital to further diagnose Lauren. Lauren was diagnosed with stage two clear cell sarcoma of the kidney on May 1st 2018. She received radiation at the removal site of the tumor for seven days followed by an intense chemotherapy plan. The level of care available has made this whole experience for the family tolerable. There is one program that has forever changed my daughter’s life through this. The Footprints program has allowed my toddler to interact with new and different people on a daily basis. She enjoys the volunteers’ company and loves to interact and to play. I do believe the pediatric research is what helped diagnose my daughter’s rare condition, for without that, we may not have got her the help that she needed. Child life services has really helped through all of the Rood family’s milestones. They really know what to do and what to say when going through this experience.
Meet Lilliana S.
In September 2018, Lilliana Schauer started to experience trouble walking. She went to numerous doctors, but they were unable to figure out what was wrong. Her balance was declining, and she completely stopped walking. Lilliana’s family was tired of no answers. They went to the pediatric ER at UF where they tested her and were still unable to figure out the issue. The doctors admitted her to Unit 45 where they performed a lot of tests and ultrasounds. Their last option was an MRI, and it showed a mast throughout her entire body. In order to get a final answer, Lilliana had to go through a bone biopsy, which is when the family met Dr. Slayton. He was kind and gentle while explaining Lilliana’s condition to her family. Lilliana was diagnosed with B-cell acute lymphoblastic leukemia.
Meet Mateo H.
On February 4 2014, Mateo Hernandez’s mother was at her 23 weeks of pregnancy regular checkup when 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, the Hernandez family’s world fell apart. All the doctors they met told them that Mateo had no chance at all and that they should prepare themselves to say goodbye as soon as he was born. They refused to accept that. Mateo’s parents started researching and found UF Shands Congenital Heart Center. At their first meeting with Dr. Bleiweis’s team at the Congenital Heart Center, the doctors told them that Mateo had a chance - not an easy one but a chance nonetheless. Since that day, the team has become Mateo and his parents’ surrogate family. Everytime Mateo has hit a bump on the road or they’ve needed any kind of help or motivation, their team of doctors have been there - no questions asked! Mateo has received two very intense open heart surgeries to prepare his body to live with only half a heart. Today, Mateo is a very active, determined, stubborn, playful, and smart boy who loves soccer and playing with his older brother!
Meet Max W.
Max Williams was born in Ohio with a congenital heart defect known as hypoplastic left heart syndrome. After his first three surgeries, Max was brought to UF Health Shands Children’s Hospital. In 2002, Max had banding of his pulmonary arteries and PDA stent. In 2003, he had Norwood stage I and stage II procedures. In 2005, Max had an extracardiac Fontan procedure. In 2010, Max had an LPA stent placed and now he is healing great!
Meet Mazzy J.
Mazzy Jester was diagnosed with cancer when she was 11 years old. When a trip to the ER showed numerous tumors in her abdomen, Mazzy and her family were introduced to the pediatric oncologist who told them Mazzy needed to be admitted and have a biopsy done to find out what kind of cancer she had. Mazzy was diagnosed with Hodgkin lymphoma. Her prognosis was good, but she would need to start chemotherapy right away. Mazzy was just starting middle school and was allowed to go to school for a few days before she was readmitted for a number of tests and surgeries, including getting a port in her heart where the chemo would be administered. She missed most of 6th grade in and out of the hospital going through chemotherapy and the aftermath. She responded well to the treatment but never liked the long stays in the hospital. Thankfully, the programs and volunteers always helped make the time go by. Today, Mazzy is a healthy 15 year old whose huge heart and beautiful smile reminds us what a miracle is every day!
Meet McKenna B.
By just looking at her, you would never know that McKenna Brown was diagnosed in utero with multiple complex congenital heart defects. Mckenna’s family was told, at best, to expect the unexpected, and at worst, that McKenna might not live for very long. The doctors at UF Health Shands Children’s Hospital created a plan that would go into action the moment she arrived into this world 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, she had recovered. Though McKenna had some initial challenges - such as chewing and speech, her life and her family’s life have only improved since 2009. Today, McKenna is a happy, inquisitive, and active 11 year old who brightens the lives of all those around her. While she will likely need future interventions, which are likely to include a heart transplant, 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. Mckenna’s family thanks God everyday for blessing them with the world-class healthcare McKenna receives at Shands Children’s Hospital. The doctors, nurses and healthcare professionals that make up "Team McKenna" have become like an extension of their family. Mckenna’s family is grateful to them. They love them, and they thank God for them every day. In fact, Mckenna’s family moved to Gainesville in 2014 in part to be closer to our team at Shands.
Meet Nakia F.
Nakia Farlin’s family was told she wouldn't live past the age of 4. However, God had other plans. These last several years have been rough for Nakia and her family, but they always pray and press forward. In June of 2014, Nakia had her right leg amputated, which was a very hard decision for her family to make, but they knew it was best for her. Since then, she has been doing great, and she experienced no pain nor required pain medications once she left the hospital. This past year Nakia has been experiencing some breathing issues and is now on a continuous positive airway pressure (CPAP) machine to help her breathe due to her tendency to take long pauses and stop breathing. This was yet another hard thing for Nakia’s family, but they have managed thus far. The only option left if this doesn’t work is a tracheotomy, which her family does not want, but they will do whatever is necessary. Nakia’s latest issue has been seizures, which she started having about two years ago. Her family constantly watches her to check on her health. The situation is scary, but the Farlin family knows God gave Nakia to them for a reason and He will take care of her. Nakia is now 21 years old!
Meet Nathan F.
Nate Ferrell 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 nine 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 middle schooler who loves playing video games, watching YouTube videos, and playing the violin.
Meet Nick M.
Nick Mullen 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 he lived life like any other kid. In the summer of 2012, Nick had an MRI of his heart, which showed that his heart size put him at risk for developing a sudden and potentially fatal heart rhythm. A few months later, Nick had an internal defibrillator placed, just in case a dangerous rhythm developed. Fast forward to January 2017: one morning when Nick was hanging out with friends at school, his heart suddenly went into a dangerous, super fast rhythm. The defibrillator did just what it was designed to do: it shocked his heart back into a normal beat, saving Nick’s life. Nick had open-heart surgery in the summer of 2017 to decrease the size of his overly thickened heart muscle. Since that time, his heart function has been great! Nick’s brain condition, agenesis of the corpus callosum, is stable, although learning at school can be hard at times. Nick graduated high school in spring 2020 and is looking forward to beginning college this year. Nick remains a very social and positive guy. 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 the Children’s Miracle Network. These students serve as role models for Nick and all of the other Miracle Children.
Meet Owen M.
Owen Maier was born at Munroe Regional Medical Center in Ocala, Florida, on June 10th, 2013 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 IVs, 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, which was a septostomy performed by Dr. Fudge to help sustain Owen 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. Today, Owen is an energetic 7 year old that loves playing with his big brother, Noah!
Meet Powie P.
When Powie Patterson was 2 weeks old, she stopped breathing during her first family outing. She was hospitalized, and that was the first time we heard the words “mitochondrial disease.” The path to diagnosis was long and winding, as mito can be difficult to diagnose, and because there is no effective treatment, we focus on treating her symptoms. Powie sees nine specialists at UF Health Shands Children’s Hospital and four specialists elsewhere. Mito is a systematic disease and impacts many of her organ systems. She relies on many medications and several medical interventions to function. The Patterson family is very fortunate that Shands Children’s Hospital has a pediatric gastric stimulator program that has allowed Powie to thrive! Powie is now 7 and just entered 2nd grade. We now have the correct supports in place, and she’s truly doing so well! She’s a very typical child who loves school, her siblings, and her puppies! Dance Marathon at UF has become one of her most favorite things in this world!
Meet Reilly R.
Reilly Rodgers was diagnosed with hypoplastic left heart syndrome (HLHS) at his 20-week ultrasound. At 11 days old, he had his first open-heart surgery, and at 5 months, he had his second open-heart surgery. At the end of August 2019, Reilly had his third open-heart surgery. Reilly's congenital heart defect is a lifelong battle and will result in a heart transplant in the next couple of years.
Meet Sage P.
Sage Pridemore was born with a congenital heart defect called hypoplastic left heart syndrome, which means he was born with half of a heart. The left side of his heart didn’t form properly. Since birth, Sage has had three open-heart surgeries. These surgeries were to re-route his heart to make the right side do what the left side is supposed to do. This was done to help his heart last as long as possible because one day Sage will need a new heart. Sage is now 12 years old and Dance Marathon at UF 2021 will be Sage’s 11th year as a CMN ambassador!
Meet Sam N.
Samuel Negron’s parents knew he was a fighter long before his birth. After a very complex pregnancy, Samuel was delivered at full term and weighed 8 pounds, 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, which led to a terrifying week. Samuel was transported by ambulance 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 result revealed what was threatening their son’s life. Samuel is fighting a mitochondrial disease. The mitochondria is the part of every cell responsible for creating 90% of the energy 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 of the odds and reaching milestones with much effort, therapy, and support. He continues to amaze and inspire all of those around him. If it were not for the care, support, treatments, and interventions provided by UF Health Shands Children’s Hospital, 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. The 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 spirits fill their hearts with joy and appreciation. Thank you for sharing this dance with them.
Meet Wyatt T.
Wyatt Thomas was born with five heart defects. He had a stroke at 3 months old and a heart transplant at 9.5 months old. Wyatt is now a very happy 9 year old who took his second chance at life and ran with it!
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