Gracie’s Story

Neurofibromatosis care at Niswonger Children’s Hospital

If the dirt caked under her carefully painted fingernails gives any indication, there are two colorful sides to 9-year-old Gracie’s personality: the rambunctious, tree-climbing tomboy who loves playing outside, and the girl who likes to play with her American Girl dolls, paint her nails and glue herself to a book on rainy days. No matter what, she always wants to spend time with her younger cousins, who she considers her siblings.

At 2 years old, a terrifying seizure landed Gracie and her family in a series of specialist appointments looking for answers. She was diagnosed with neurofibromatosis, a genetic condition she inherited from her mother which causes tumors to grow in the body. The tumors aren’t cancerous but cause several health issues, including hearing loss.

Gracie isn’t sure what her future looks like, but she wants to go to college. She thinks she might want to be a police officer one day.

“She’s discovering who she is, and she’ll get there,” says her mom, Jenny. Her grandmother, Penny, agrees, “She’s got a lot of determination.”

Want to learn more about Niswonger?

The Niswonger Children’s Network is dedicated to improving the health and future of the Appalachian Highlands through expert pediatric care so that we can share more heartwarming stories like Gracie’s.

Read more Niswonger Children’s Stories here.