INDIANAPOLIS — A Peru teen is exceeding expectations not only at home and in the classroom, but with her doctors too.
Brylee Boettjer lives with Neurofibromatosis type 2 (NF2), a genetic condition that causes tumors to form on the nervous system.
Although her tumors aren’t cancerous, they still heavily impact her daily life.
Boettjer lives with several tumors on her brain, eyes and spinal cord.
"I have three on my brain, four in this eye and I have six down my spine," she said.
NF2 is a very rare condition, impacting one in 25,000 people, Riley physicians say.
Boettjer says it sounded like a foreign language when doctors gave her the diagnosis.
"They said Neurofibromatosis, I was like 'huh.' It sounded like supercalifragilisticexpialidocious. I was just like, 'okay, whatever you say,'" Boettjer said.
There is no cure for NF2, and treatment has only recently started developing.
“Historically, the challenge has been that there’s not always therapy for these types of tumors and conditions. That was very frustrating to us and very devastating for the families,” Riley Hospital for Children Nurse Practitioner Jayne VonBergen said.
Boettjer will likely live with NF2 for the rest of her life.
"I could be doing this for a majority of my life, but I mean, it's that or more surgeries," Boettjer said.
NF2 has forced her to be sidelined from sports, unable to play basketball.
She found ways to be involved with the team, but it wasn’t always easy.
"For a while, it was just bad news, bad news and more bad news. It was very rough at the beginning. It was like 'hey I should be out here doing that,'" she said. "I let myself have those moments here and there."
Boettjer had to have brain surgery to remove a tumor, which meant she had to learn to walk again.
“I knew in my mind what I needed to do, but my body just wouldn’t do it,” she said.
However, she kept pushing, just as she hopes anyone going through a tough time will do.
"One foot in front of the other. I want kids to be able to see that they can do it too," Boettjer said.
Boettjer has been living her life like every other kid.
She went on to become prom queen and graduate from high school, with college credits too.
"Honestly, I just want them to be able to see that I've gone through three different chemos, two surgeries and I am still standing. I am still doing my day-to-day," Boettjer said.
Boettjer is taking part in a newer treatment at Riley Hospital.
It's a multidisciplinary clinic that gives patients an opportunity to see several providers in one visit.
