James Discovers a Second Home at the Hospital

James loves rooting for the Philadelphia Eagles football team and playing with his family’s cats Uno and Linus. At Children’s National Hospital, he also finds a steadfast team on his side and comfort when he needs it most.

 

At 7 months, he was diagnosed with neurofibromatosis type 1 (NF1), a genetic condition that causes benign tumors to grow on the nerves of the body. As a result, James has curvatures along his spine, and his shins were bowed and could easily fracture.

 

James has had eight surgeries over 10 years at Children’s National. This included spinal fusion to prevent worsening curvature of the bones in his back and inserting and lengthening growing rods for alignment. James stayed in the hospital for nearly two months before and after his spinal surgery. 

 

Specialists across departments follow James’ health closely, including orthopaedics, oncology, neurology and nephrology. At age 11, physical therapy helped him adapt to prosthetics after amputation of both of his lower legs due to complications from NF1. He needed intensive post-operative care. Through his stays, child life specialists like Sophia DeBacco brought him companionship and comfort.

 

“Sophia was his champion and best friend in the hospital,” says his mom Megan. “Children’s National feels like a second home to him. He has a lot of positive memories and experiences, despite the reason for his visits.”

 

Expert treatment through the Gilbert Family Neurofibromatosis Institute gives James and his whole family hope. Megan is grateful for care that extends from help scheduling appointments to connections for community support. 

 

“We’ve met a lot of families with NF along the way through Children’s National and our doctors,” Megan says. “It’s reassuring to talk to people who really get it and for James to know other kids like him.”

 

No matter what his future holds, James can count on his coaches and teammates in care to help him navigate his next play.