Woods Cross City Council declares May Neurofibromatosis MonthMay 09, 2022 09:50AM ● By Becky Ginos
WOODS CROSS—Rylie Evans is a happy, active 9 year old who loves to act, dance and swim. She also has Neurofibromatosis, also known as NF, a rare genetic disorder that causes tumors to grow on nerve endings throughout the body. One in 3,000 people have it and there is no known cure.
“Rylie has bilateral optic nerve gliomas,” said Rylie’s mother Brandie. “It grows on the nerves that affect her vision. It’s not cancer but it progresses really fast. She has lost the vision in her left eye. The doctor said she’ll never regain her vision in the left eye but she has 20/20 vision in the right.”
Rylie and her mother are Woods Cross residents and spoke at the city council meeting on April 5 to share her story about living with Neurofibromatosis (NF). The council approved a resolution to declare May Neurofibromatosis Month.
“One of the great benefits of that is you know people are looking out for you,” said Brandie. “It’s also for education that there are people struggling with the disorder. It gets information out in the community.”
Brandie said they found out through the city newsletter that there was someone else in Woods Cross with NF. “They go to our school and we didn’t even know. It gives kids a sense of community that they’re not walking through this life alone, which has really been important.”
NF is different for every single person, she said. “It doesn’t stop them from being successful. Rylie does remarkably well. She’s never known any different. She’s pretty incredible. I call her my NF hero.” λ