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Davis Journal

Fourth grader thrives despite living with rare genetic disorder

Apr 15, 2022 10:25AM ● By Becky Ginos

Rylie hasn’t let her condition stop her from doing the things she loves. Courtesy photo

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.”

It’s been a long journey for the Evans family starting when Rylie was a baby. “When she was born there were no signs that anything was wrong,” said Brandie. “We started seeing what we thought were birthmarks. When the doctor saw them we were told to take her to Primary Children’s.”

She started a chemotherapy protocol two days after her second birthday that continued for about a year, Brandie said. “At two she didn’t have a whole lot of hair. It did start thinning but she didn’t lose all of it. She was sick on and off and lost some weight. It made her blood counts go down so it was kind of like quarantining; she had to stay indoors for about two weeks every month.”

Brandie said it was hard to watch her baby go through that. “It’s almost harder though as she’s gotten older. She didn’t know what was happening when she was two but now she knows when she has to miss school or can’t do dance.”

There are also learning disabilities with NF, said Brandie. “The pandemic caused her to fall further behind. As she gets older there are book reports, etc. She’s increasingly aware that she’s not the same as everyone else.”

The Evans family are Woods Cross residents and the city council adopted a resolution declaring May NF month at their last meeting. “One of the great benefits of that is you know people are looking out for you. 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.”

There is also an NF specialist based out of Primary’s, she said. “We couldn’t have gotten more lucky to have the hospital and doctor in our backyard. A lot of people move here for care.”

Rylie is now in the monitoring stage, said Brandie. “She goes in every six months. In the next two years they'll probably do a full body MRI to see if there are more tumors.”

The Evans family also has a little boy. “We had him tested and he does not have NF,” Brandie said. “Rylie’s is spontaneous. She’s all on her own in this one.”

NF is different for every single person, said Brandie. “It doesn’t stop them from being successful.”

Rylie does remarkably well, Brandie said. “She’s never known any different. She’s pretty incredible. I call her my NF hero.” λ