by Becky GINOS
WOODS CROSS—Rylie Evans seems like any other 6-year-old girl. She just finished kindergarten, loves to dance and has a huge smile. But unlike other 6-year-olds, Rylie is battling a rare condition called Neurofibromatosis (NF).
“It’s a genetic condition that can either be inherited or spontaneous,” said her mother Brandie Evans. “It affects more people than MS but it’s less studied. It’s different for everybody but tumors form on nerve endings and it can affect hearing, sight and bones.”
Rylie has brain optic nerve gliomas. “They’re small tumors on her optic nerve, one on each of the right and left nerve,” said Brandie. “It was pretty aggressive. We found it when she was 19 months old. Six weeks later her eyes started rolling back into her head and the MRI showed the tumors had doubled and tripled in size. So they started chemotherapy just after she turned 2 years old.”
Most NF tumors are noncancerous, she said. “They treated it with chemo because of the location she could lose her sight so they treated it more aggressively. Only about 15 percent result in a cancerous tumor. There is no known treatment or cure but they are doing clinical trials.”
The chemo was a success in Rylie’s right eye but she is completely blind in the left. “She’s back to seeing 20/20 in the right but by the time they caught the tumor it had taken over in the left so she doesn’t see anything,” said Brandie. “We were really lucky because we’ve only had to do one protocol of chemo with Rylie.”
Rylie was genetically tested and doctors determined her NF was spontaneous and not inherited. “She was our first,” said Brandie. “We had our second baby tested but he doesn’t have it. We don’t carry the MF gene. Lucky for us we live in a state with incredible doctors. There was an amazing medical team that acted quickly. She has her remaining vision because of them.”
MF does come with disabilities. “She’s struggling daily in school and other activities,” Brandie said. “Reading and math are especially hard. Math is an abstract concept for her. So we’ve had a lot of navigating to finding the right school.”
Rylie has an MRI every three months to make sure the tumors aren’t growing. “Eventually, she’ll have full body scans,” said Brandie. “She’s constantly at the doctor having a once over to make sure nothing is out of place. For her she thinks all kids go to the hospital all the time.”
In honor of Rylie, the Woods Cross City Council recently set aside May 17 as Neurofibromatosis Awareness Day.
“Over a million people are suffering from this,” said Brandie. “Being more aware of the condition brings the community together. They need more people to register for clinical trials because they’re all affected differently and they need to pinpoint what will be a successful drug to treat all these patients.”
Brandie said in the current social climate, kindness will help the most. “Some people have tumors on their back or face,” she said. “Just holding a door open would be really nice. It might not seem like a big deal but it helps, or not rushing to conclusions or judgments. Being willing to help makes a big impact.”
Although Rylie has been through many tests, it still causes some anxiety. “As we prepare she knows she’s going to get poked and prodded,” said Brandie. “We hold our breath as parents and think ‘what if?’ We try not to let it eat away at us but there is a chance things could change. It kind of creeps up on you and takes your breath away a little bit.”
In spite of the challenges, Brandie said they’re a happy family. “We just roll with the punches – but I wouldn’t wish this on anybody,” she said. “We’ve had some of the most incredible blessings and we’re closer to friends and family. It helps us to feel like we’re not alone.”