HAGERSTOWN, Md. (WDVM) — A local family hosted a Neurofibromatosis awareness event over the weekend.
Family and friends gathered at Fairgrounds Park to support Shelly Stitely and her family. Stitely’s 13-year-old daughter has been living with neurofibromatosis–a genetic disorder that causes tumors to grow on an individual’s brain, spinal cord, and nerves–since she was just 6 years old.
“My daughter has NF 1,” said Stitely. “Last year she was getting sick over and over and she was getting headaches because sometimes she eats until she gets sick, so I thought that’s what she was doing but she wasn’t it was the neurofibromatosis.”
Her daughter Gabrielle was diagnosed with the disorder, which currently has no cure. Stitely says because the genetic disorder progressed so aggressively, her daughter needs surgery.
“She went into the doctors in February and she was normal she had a straight back,” she said. “From February until April her back went to a 65 degree angle. Her doctor said it would get 100 percent worse, it would even cripple her without surgery.”
Stitely decided to do the awareness walk event because many people don’t know about the condition, she says from her experience, there could be many people living with the disease that are unaware of it.
Gabby may be young, but her mind isn’t. She says she knows why her family came out to support her.
“Because I’m going to get my back surgery, because my back was hurting,” she said.
When Gabby was asked if she was scared of having surgery she had a strong response:
“No,” she said. “I’ll have medicine and then I fall asleep and it will be better and then ill wake up.”
Gabby is scheduled to undergo surgery later this month.