Meet Will and Charlie: Nemours Children’s Health-Florida Champions

Meet Will and Charlie: Nemours Children’s Health-Florida Champions

During Family Advocacy Day, Will, Charlie and their family will discuss their health journey, Nemours Children’s Health-Florida’s role in providing them with necessary care, and why we must invest in the future of patients like Will and Charlie.

When Will was 18 months old, he had his first severe allergic reaction and ended up in the hospital. He was soon diagnosed with life-threatening food allergies and allergic rhinitis and at 13 he was diagnosed with eosinophilic esophagitis (EOE).

“Our family had to learn to read food labels and be extremely careful,” says Laura, Will and Charlie’s mother. “Will is a twin so it created a lot of anxiety and fear about feeding both Will and his sister, Lilly.”

Will has grown up at Nemours and other children’s hospitals. “He has missed lots of school to work through his illness and has endured hundreds of scans, tests, bloodwork etc. over 19 years,” says Laura. “He has missed lots of special activities and events in his life because he was sick.”

Will and Charlie, Nemours Children’s Health-Florida champions,
are participating in Family Advocacy Day 2023.

Charlie was born when his older brother, Will, was six. Immediately, Charlie had failure to thrive and required feeding tubes. He was also diagnosed with eosinophilic esophagitis and life-threatening food allergies.

Similar to his brother, Charlie spent a lot of time at Nemours receiving care. He spent a year doing speech therapy, and time with dietitians and nutritionists.

Currently, Will is in his first year of college managing his health mostly on his own and cooks all of his own meals. He is currently in remission and is trying to slowly add one food at a time back into his diet. “This is difficult while living on his own as he has to be prepared for an allergic reaction,” says Laura.

Will and Charlie have both faced challenges getting their medicine covered by the family’s private insurance. Will’s medicine costs thousands a month and, until recently, was paid for out of pocket. The family’s insurance company also will not pay for Charlie’s medicine which costs thousands of dollars a year. “We pay out of pocket for this as we have no choice,” says Laura. “It is a very difficult situation.”

Today, both boys are doing well and in remission. Will enjoys bouldering, boating and cooking for friends. Charlie enjoys running and playing soccer with friends.

Family Advocacy Day

Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.