About the Course

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 John R. Oishei Children's Hospital in Buffalo, NY.

Born in India, Vignesh was adopted by his family at five years old. Vignesh was diagnosed with spina bifida, as well as hydrocephalus, a condition in which the body is not able to rid of excess fluid in the brain. He also experienced hearing loss and needed a cochlear implant surgery while in India. At Oishei Children’s Hospital, Vignesh underwent four surgeries, one of which was to replace his current shunt with a new one. At the age of nine, Vignesh received a new cochlear implant and is doing amazing. His family is grateful for the tremendous support and care at Oishei Children’s Hospital.

Donations to Children’s Miracle Network Hospitals help patients like Vignesh receive exceptional care and specialized occupational therapy.

Treated at Driscoll Children's Hospital in Corpus Christi, TX.

Paislie lights up the room with her bright smile and big energy, but there was a time when things weren’t so bright in her life. After searching for answers to explain the sudden loss of movement in her leg, Paislie was diagnosed was acute lymphoblastic leukemia. At four years old, Driscoll Children’s Hospital became ‘home’ for Paislie and her family. She began an intense chemotherapy regimen while celebrating her birthday and the holidays in the hospital. As with any child with cancer, Paislie experienced several highs and lows throughout her treatment and even came close to losing a kidney. Thankfully doctors at Driscoll were able to able to provide her with the lifesaving care she needed to not only treat her cancer but also to save her kidney and send her on a path to creating more milestones. Paislie rang the bell to mark her last chemotherapy treatment at six years old. She continues to receive follow-up care at Driscoll’s Cancer and Blood Disorder Center, and her prognosis is good. Today, Paislie is back to doing what she loves – riding horses, cheerleading, and spending time with friends and family.

Children’s Miracle Network Hospitals helps fund important hospital programs such as Child Life, where specialists make sure kids like Paislie are comfortable, entertained, and at ease before procedures.