A fundraiser on Park Central Square this weekend will raise money for neurofibromatosis. It’s being organized by a young woman from Nixa who was diagnosed with NF when she was only one.
25-year-old McKenna Smith has neuro fibromatosis – specifically NF1 and plexiform neurofibromatosis.
"NF1 is a genetic chromosomal deformity where it affects your chromosome 17, and that will cause tumors to grow off your nerve endings and your skin, muscle," said Smith. "For me, I have tumors all throughout my neck. It goes down my spine. I have shoulder deformities. When I was 19, my neck broke from the force of the scoliosis and the tumor pushing on it. And I ended up having to have a spinal fusion from C2 all the way down to T12."
"I've also been on four clinical trial chemotherapies, none of which have worked for me. I've also been through 28 sessions of radiation therapy."
According to the Mayo Clinic, plexiform neurofibromatosis is when a neurofibroma grows on several nerve bundles. They spread out on the skin in a network-like pattern. Smith’s is on the back of her neck.
Because Smith’s tumors have been stable, she’s gone from having to get scans done every six months to once a year.
Doctors believe Smith had NF in utero. It’s genetic – Smith said the gene was passed down to her from her paternal great-grandfather. Her sister doesn’t have it. And it affects everyone differently.
"Some people only have maybe a few bumps on the outside of their skin and maybe a couple learning disabilities," she said. "Other people, they can have tumors growing off of their face. They can have brain tumors and extreme disabilities. And it varies a lot between everybody."
Smith said she’s had 30 surgeries to debulk tumors and for pain management, and she’s had to re-learn to walk three times.
But she said, as a young child, she didn’t feel any different from her classmates.
"Growing up, when I was younger, I didn't feel any different from anyone else. Even though I was going through all these medical issues, I just loved being a kid," Smith said. "As I got older, things did become a little bit more hard because I realized how different I am, and I didn't really...I just pushed through. Basically, I just made myself push through and every time everything's gotten better."
She used to think she would never be able to work, but she’s had a job for four years that she loves.
Smith hopes to raise awareness and money for NF research by holding a fundraiser this weekend. McKenna’s Journey of Hope will run from noon to 5 p.m. on Park Central Square in Springfield. It will feature a family and friends walk, raffles, giveaways, food, balloons, temporary tattoos and more. And those who attend can talk with Smith and hear more about her story. Proceeds will go to NF Midwest, which donates money directly to the National Institutes of Health for research.
"There's not much awareness about EF1, and there's not much funding either for research," said Smith. "As of right now, there's only two FDA approved medications for plexiform neurofibromatosis, which is a genetic mutation of NF1, and I really just want to help bring hope and awareness to those people."
