At 9 months old, Charlie was diagnosed with eosinophilic esophagitis (EoE), a chronic allergic inflammatory disease of the esophagus, the muscular tube that carries food from the throat to the stomach. Shortly after Charlie’s EoE diagnosis, his family sought specialized care, making frequent trips out of state. He now receives all his care at Nemours Children’s Health in Florida. Nemours has become an important partner in Charlie's treatment, offering expertise and support in managing his disorder.

Charlie sees multiple pediatric specialists at Nemours including speech therapists, dietitians, nutritionists, orthopedists and endocrinologists. The youngest of three siblings, Charlie shares his condition with his older brother, with whom he has learned to thrive despite EoE. Charlie, 14, enjoys cooking and learning to make allergen-free substitutions to recipes he makes. He loves school, playing soccer with friends and running with his teammates on his cross-country and track teams.

STXBP1: Malachi’s story

His initials are MVP, and no one in any field, industry or sport deserves this acronym more.

Born in August of 2017, after just nine days, Malachi began experiencing brain-damaging seizures. His mom, Hope, learned about infantile spasms, focal seizures and subclinical seizures. She also learned about his genetic disorder, STXBP1.

Fewer than 1,000 children in the world have the disorder and the limitations it creates, including severe mental delay, tremors, dysphasia, cortical vision impairment, low muscle tone and retractable seizures. Malachi is G-tube dependent for nutrition and contends with ataxia, which interferes with his mobility and ability to talk.

The search for Malachi’s new medical home

When the military family was stationed in Florida, Hope began a familiar quest for the best possible care in their new home base — research that routinely requires countless hours when her family is restationed. Beyond having a roof over their heads, finding care for Malachi is always the highest priority. Hope’s research ended the moment she discovered Nemours Children’s Health.

“All signs from my investigation indicated that Nemours Children’s offered the best clinical care, provided by passionate staff and administrators,” said Hope. “Malachi sees neurologists, nutritionists, surgeons, ophthalmologists and gastroenterologists. After a year as a patient family at Nemours, we know we could not be more blessed.”

MVP today

Hope continues, “Although Malachi and our family have gone through some of the most unimaginable and nightmarish obstacles his disorder has to offer, MVP’s infectious joy and superhero persona never falter. He enjoys being outside, seeing the trees dance in the wind and the waves crash at the beach. He likes watching ceiling fans, going to grocery stores and playing with his favorite slug fidget toy. But most of all, he loves racing alongside his brother, Declan, and friends he’s made in a local inclusive running chapter. We could not thank everyone at Nemours enough for all they’ve done and continue to do for Malachi.”