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.
Catriona also known as Cat was diagnosed with asthma before she was 6 months old. Just before her 4th before Cat was hospitalized and later discovered that she had a rare and life-threatening condition called Primary Pulmonary Hypertension. When she was 7 she she spent 345 days at UF Health Shands before receiving a heart and double lung transplant right after her 8th birthday. This year Cat will celebrate her 18th birthday and her 10 year anniversary of her new heart and lungs. Cat has not let anything stop her or get in her way since she was diagnosed.
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!
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.
Evangeline also goes by Eva and is loved by so many especially her nine older siblings! At 5 days old she woke up with a low body temperature and shortly after lost color and collapsed in my arms. She was admitted to the NICU at U of M for hypoglycemia, hypothermia, metabolic acidosis, jaundice, tremors, and apnea. She went through many tests before being diagnosed with Mitochondrial disease. Eva will need treatments for the rest of her life but she does not let this disease stop her from being an energetic and silly little girl!
Ayden was diagnosed with a rare inoperable brain tumor called Pilocytic Astrocytoma with glioma blast when he was 3 years old. He has had more than 20 surgeries and lost his vision at the age of 3. Ayden is now undergoing active chemo treatment but without a miracle Ayden will need treatments for the rest of his life. He attends a school in Florida for the blind and deaf where Ayden is able to meet kids similar to him. His older brother JJ likes to joke around with him and is his biggest fan. Even though Ayden can’t see what he’s doing, he has some amazing dance moves and is always dancing to music!
Chloe was diagnosed with Turner’s Syndrome and Hypoplastic Left Heart Syndrome when she was in utero. Before Chloe received a heart transplant the day after her second birthday she went into universal organ failure until her miracle came, her new heart. Her spirit has stayed high throughout her experience even with the constant care she requires. She has secondary complications including hypogammaglobulinemia and aortic dissection. Chloe has 5 siblings who she loves and who support her through this all.
Jada was born an athlete and has never stopped filling her love for sports. One day she woke up running a high fever and was unable to walk. She had blood drawn at the emergency room where she was showing signs of Leukemia and within hours was airlifted to Shands. Jada was diagnosed with Acute Myeloid Leukemia M7 and Acute Myeloid Dysplasia. She has gone through multiple rounds of chemotherapy and after her third cycle of chemo the goal is for a bone marrow transplant. Even through all these obstacles she hasn’t lost her wonderful, no-fear attitude.
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.