33^rd Annual Miracle Tournament and Celebration Dinner

Treated at West Virginia University Children’s in Morgantown, WV.

Addison was eight years old when she had a rapid onset of seizures, which were misdiagnosed as panic attacks. Doctors encouraged her family to take their already scheduled vacation, but after arriving in South Carolina, her episodes increased in intensity and frequency. When her mom took her to the nearest emergency department, she was told it would be a thirteen-hour wait. Addison’s eyes were dilated and her hands and legs were shaking; her mother wondered if her daughter was having seizures and pleaded for a doctor to admit her daughter. After countless tests and doctors’ visits, neurologists diagnosed her with cortical dysplasia to the frontal lobe, which is a congenital abnormality of brain development that can cause irretractable epilepsy. Addison underwent a craniotomy with right frontal lobe resection and a few weeks later, she needed a spinal tap to drain the excess fluid from her brain due to a cerebrospinal fluid leak. Today, although on medication and still having seizures, Addison exudes strength and wisdom far beyond her years. When she grows up, Addison wants to become a Child Life specialist.

Donations to Children’s Miracle Network Hospitals provides life-saving care and essential programs that support Addison and her family during her treatments.

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 Children's Hospital of Philadelphia in Philadelphia, PA.

Porter was born with Down syndrome at Children’s Hospital of Philadelphia (CHOP), where the care team helped his family understand the medical, cognitive, and social complexities to ensure he could have the best quality of life. From the beginning, specialists provided education through their Trisomy 21 Symposiums, which helped Porter’s family build a support network of other families going through similar experiences. During the medical procedures and hospitalizations for respiratory illnesses, Porter’s family was grateful for the opportunity to participate in a few clinical trials through CHOP, helping to build a body of research that will pave a positive future for other individuals with intellectual disabilities. “Porter is thriving today because we’ve got a team that sees him as a person with a bright future,” his mom says, adding that “the team at CHOP has always been by our side.” Now 12 years old, Porter plays drums in the school band. He loves horseback riding, baseball, Tae Kwon Do, and Special Olympics swimming.

Thanks to the support of Children’s Miracle Network Hospitals, Porter and his family received incredible care and support, including music and art therapy.