SYLVANIA, Ohio — Imagine having a condition that causes tumors to grow on your nerves all throughout your body. That's the reality for 15-year-old Emily Baron of Sylvania.
She has neurofibromatosis, which forced her to become a fighter from the start.
"It was her second Well Baby appointment when it really kind of piqued our interest, looking at what's called café au lait spots on her skin," Emily's mother, Ashley Jordan, said.
Jordan thought Emily's spots were birthmarks. Unfortunately, she would learn they were much more serious.
An NF diagnosis means Emily spends a lot of time in doctors' offices. Some of them are out of state. "A lot of missing school and built-up assignments," Emily said.
"The time away is probably the biggest hindrance," Jordan said. "In addition to all of the costs that's associated with any medical condition that there isn't a cure for."
Emily gets regular MRIs to spot and monitor tumors. Right now she has one on her brain, her eye and a few on her spine.
For now, doctors are monitoring the tumors on her eye and spine, but the one at the very center of her brain will have to go.
Emily said the tumor gives her headaches. Plus, "Sometimes I get hallucinations. Like smoke plumes in front of my face," she said.
Emily will have surgery this summer to remove the tumor. Unfortunately, it's close to what's called the chiasm, which is where images are refracted so the brain can read them.
"The big concern is with the proximity to the chiasm, as soon as they remove it the amount of pressure that will be released or succumb in that area will essentially put nerve pressure on those nerves and decrease her ability to see," Jordan said.
Emily, who aspires to be a cosmetologist someday, is choosing to be positive.
"I think it's better to look at it with a positive outlook instead of just negative, negative, negative," she said, "'Oh, this is a bad thing that happened to me, so I'm going to bring everyone else down.'"
May is NF Awareness Month and if you want to help raise awareness and funding to support families, you can come out to a fundraiser on May 17 at the Toledo Club. To register, click here.
"I want to get myself better, but I also want to help out other kids who have this," Emily said.
"To know this has lifelong impacts, and to feel the love and support she'll receive from this is huge," Jordan said. "Positivity goes a long way."