33^rd Annual Miracle Tournament and Celebration Dinner

Treated at Nicklaus Children's Hospital in Miami, FL.

After a seemingly healthy pregnancy, Jaxon’s parents were told not to worry by medical providers by a few early signals that something seemed off. Thankfully, his uncle noticed the ridge along Jaxon’s forehead and did not believe the triangular shape of Jaxon’s head was caused by the trauma of delivery. At two weeks old, a CAT scan confirmed Jaxon’s metopic craniosynostosis, where the soft spot at the top of his head had been prematurely fused together in the womb. Jaxon’s parents took him to the renowned Nicklaus Children’s Hospital Brain Institute. At seven months old, Jaxon underwent an eight-hour cranial procedure at Nicklaus Children’s. Despite the challenges, he was in good hands, even combatting other anomalies such as the misalignment of the eyes, a hole in his heart, a horseshoe-shaped kidney, and more. Given the range of birth defects their son faced, Jaxon’s parents’ genetics testing at Nicklaus Children’s confirmed that he had a rare gene mutation in CDK13. There wasn’t much known about CDK13 at the time. Today, nearly 300 cases have been identified globally. For now, Jaxon’s parents treat each symptom as it arises. He struggles with tasks requiring the use of his hands and motor skills, and his ADHD and moderate autism made everyday life and academic tasks challenging. And yet, he continues to make remarkable progress in physical therapy, occupational therapy, and speech therapy. Jaxon’s resilience and carefree, fun personality positively inspires all the lives he touches.

Donations to Children’s Miracle Network Hospitals support the clinical institutes and personalized care that allow Jaxon to make remarkable progress on his journey.

Treated at Orlando Health Arnold Palmer Hospital for Children in Orlando, FL.

During their 20-week ultrasound, Akosua and Fernando learned that their baby had spina bifida. Determined to explore all options, they reached out to the Fetal Care Center at Orlando Health Winnie Palmer Hospital for Women and Babies after learning the hospital offered in-utero surgery for babies with this diagnosis. Within a week, Akosua started an evaluation to see if she and her baby were suitable for in-utero surgery, and thankfully, they were. At 25 weeks into her pregnancy, Akosua underwent surgery to correct the defect in Celeste’s spine. Seven weeks later, Celeste was born, weighing 4 pounds, 10 ounces. After a short stay in the neonatal intensive care unit to ensure her health, she was able to go home. Now, at five years old, Celeste is thriving. She walks on her own and enjoys gymnastics, swimming and playing with her sister. Celeste is smart, playful, determined and kind. Celeste goes to weekly physical therapy, and as she grows, she will continue to receive care at the Spina Bifida Clinic at Orlando Health Arnold Palmer Hospital for Children.

Donations to Children’s Miracle Network Hospitals helped fund the fetal surgery program and the state-of-the-art ultrasound machine used to detect spina bifida in kids like Celeste.

Treated at UF Health Jacksonville, Wolfson Children's Hospital in Jacksonville, FL.

While Nathaniel was in utero, several doctors diagnosed him with severe hydrocephalus, heart conditions, and informed his parents he had suffered a stroke. Born at 39 weeks gestation, Nathaniel was the biggest baby in the neonatal intensive care unit. He underwent multiple surgeries over several years and he still faces daily struggles including severe eating, colon, sight, and speech issues. Nathaniel also has cerebral palsy, mitochondria syndrome, and tick disorder. Even with his challenges, Nathaniel remains positive. Today, Nathaniel is ten years old and loves LEGOs and traveling to see family in Germany.

Donations to Children’s Miracle Network Hospitals has helped provide many resources like a special shunt for Nathaniel that makes his daily life easier to manage.