Izabella (Bella) Neira
Izabella was born with a rare surfactant deficiency that doctors gave a life expectancy of 7 months. 14 months after she and her twin, Jessy, were born Bella received a heart and double lung transplant. Because of the funds from Dance Marathon Bella just celebrated her 7th birthday! Bella also has the honor to serve as one of the National Champions for CMN. Bella runs around and laughs all the time with her 3 sisters despite everything she’s gone through.
Nate was born with a genetic condition called Mitochondrial Disease. This disease attacks the mitochondria leaving the body tired and lacking energy. Even at the hardest times Nate is a fun and caring kid who loves everything there is to Dance Marathon. He doesn’t think of going to the hospital as a need but rather a want. He loves talking with his nine specialists and meeting new people through UF Health Shands Children’s Hospital.
Hours after Camden was born he was life flighted to UF Health Shands where he was diagnosed with a severe form of congenital heart disease called Tetralogy of Fallot with Pulmonary Atresia. Camden has received two major open heart surgeries, two abdominal surgeries, and 5 heart catheterizations. Camden’s best days are when he gets to spend time laughing with his two younger siblings, Parker and Nora. Because of all the donations from Dance Marathon, they are able to have an older brother!
Powie, also known as “Super Pow” was born with Mitochondrial Disease, a genetic disorder that depletes vital energy needed for adequate organ function leaving her frequently tired. Powie has several different pediatric specialists at UF Health Shands Children’s hospital which she calls her “second home.” Even though this disease constantly drains her energy she does not let it stop her from smiling and singing her favorite song “Fight Song.” Powie loves horses and all things Dance Marathon!
Sage was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. This means that his heart never fully formed and would not efficiently pump blood throughout his body. A week after he was born he had his first and successful open heart surgery. He received two other open heart surgeries after that. Sage will eventually need a heart transplant but until that he is a loving 12 year old who loves any and all sports.
Minutes after Owen was born he was diagnosed with a congenital heart defect which required immediate and life saving care from UF Health Shands heart team. Owen had surgery at 6 hours old for Transportation of The Great Arteries and 2 weeks later had open heart surgery to fix his heart. Owen is an energetic 5 year old who loves to do everything his older brother does and doesn’t let his condition stop him from being a kid.
Reilly is in current heart failure. He has a CHD called Hypoplastic Left Heart Syndrome, and has had the 3 repair surgeries for that. Just recently in 2020 he was diagnosed as being in heart failure and has been placed on the heart transplant list since early May. In August, after being home for just 2 months, Reilly crashed again, this time most of his organs failing as well. On week 2 of being inpatient, Reilly received a Berlin Heart, which is a mechanical artificial heart. We are currently inpatient until he receives his new transplanted heart.
Bailey has been a patient at UF Health Shands since she was born 10 years ago. Bailey was born with a rare chromosomal disorder called Turner’s Syndrome. She has multiple specialists who manage and treat the various organs that are affected by this disorder. Her bright and bubbly personality keeps her spirit up through the enduring growth hormone injections she gets on a daily basis. Bailey continues to spend her days spreading awareness on her disorder and loving Disney Princesses and candy!
Donovan was diagnosed with Spina Bifida Myelomeningocele, Chiari || Malformation, Hydrocephalus and bilateral Clubfoot at 20 weeks gestation at one of his fetal anatomy scans. Sadly his mom was not able to have the homebirth she had planned but with the help of UF Health Shands was able to have a safe and comfortable delivery. Donovan had his repair on his spine 2 days after he was born and was required to lie on his tummy for 3 weeks to heal. Along with his spine surgery he’s had 3 brain surgeries and multiple other procedures. Donovan is treated by a team of 12 specialists that are mainly located at Shands. Donovan learned how to use a wheelchair by himself and is able to get around just as quick as his 5 older siblings!
Kinsey has been a patient at UF Health Shands since she was 7 months old. One day she began swelling up and was having kidney failure. Kinsey was then diagnosed with Atypical Hemolytic Uremic Syndrome, and Cardiomyopathy. She has undergone a kidney transplant, Plasma and Albumin transfusions, multiple hospitals stays, and blood transfusions. With the help of donations and her doctors, Kinsey just celebrated her sweet 16 and is probably the only child that likes the Disney villains over the heroes!
Beckett was born on October 12, 2014 after 39 weeks of an easy joyous pregnancy. Beckett was a healthy baby boy with a full head of hair. Once home his family noticed his breathing didn’t seem right to them. His parents asked the doctor but she couldn’t find anything wrong with him and thought he would outgrow the sometimes fast breathing. A couple days after his 2nd month check up he was sleeping a lot and not eating. On December 22nd, 2014 his family noticed red dots in his diaper. Thinking he was dehydrated or had an UTI they took him to the ER. Once there they were thinking he had an UTI as well, but once that came back negative they wanted to send him to the children’s hospital for further testing. On the way to Arnold Palmer his parents noticed Beckett’s lips turned purple. They gave him oxygen and he started to look better. By the time they got Beckett into his hospital room he was in full blown respiratory distress. They instantly rushed him down to ICU, intubated him, and learned his heart was enlarged by an echocardiogram. His family stayed at Arnold Palmer for two days until they decided it was better if Beckett went to Shands. Beckett arrived at Shands on Christmas Eve 2014. On January 5th, 2015 Beckett received the Berlin Heart, which is a mechanical heart that does all the work so the damaged heart can rest. 10 days later we got the call for a new heart! Beckett was transplanted on January 15th, 2015.
Dani-Lynn also known as nugget is the sweetest, most loving little girl and has 2 older sisters who share her love for Disney. She was diagnosed with Congenital Heart Disease and at 8 days old she underwent surgery to fix her heart. After 5 weeks in the hospital, her family was finally able to go home. At 7 months old she had outgrown her first open heart surgery and they were unable to find her shunt on an ultrasound. Dani-Lynn was diagnosed with Congenital Heart Disease, Hypoplastic Left Heart Syndrome, Ventricular Septal Defect and Partially Anomalous Pulmonary Return. She is currently still on the heart transplant list and the family is waiting for the phone call for the miracle they need! Dani-Lynn is currently receiving a cell replacement therapy which is similar to a chemo treatment.
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.
Cason Tripp for #KirstynStrong
Kirstyn was born at 39 weeks gestation and received some abnormal blood work when she was only 24 hours old. At that time she was transferred to UF Health Shands where she received triple phototherapy for advanced jaundice. On day 7 of these treatments she started to experience some breathing issues. Doctors were not hopeful that Kirtsyn would survive through the night. She spent 9 weeks in the NICU were she was officially diagnosed with Propionic Acidemia which is a rare metabolic disorder that occurs in 1 in 100,000 births. Along with this rare disorder she was also diagnosed with cardiomyopathy and ADHD. The genetics and cardiology programs at Shands were the reason that Kirstyn was able to live a long 11 years of happiness. She passed away still fighting and with the love of her family by her side. Her parents and brother are now speaking and spreading awareness in her honor.