A Macomb County model for American Girl Dolls is opening up about her health.
The now 14-year old Alyea Rourke says she's been diagnosed with a disease so rare, it took nearly two years to diagnose.
"It seemed like a giant dream to me. I was just so scared I immediately thought I will never be able to skate again," she said.
Alyea was diagnosed with chronic recurrent multi-focal osteomyelitis (CRMO), a potentially serious and unique form of bone disease that can be long lasting. Right now, there's no known cure, doctors say.
"They described to us was possibly an ear issue, or it was an infection in the jaw or it could’ve been a tooth decay or something like that. So we went probably through about seven doctors before we got an answer," said Lynda Rourke, Alyea's mother.
Despite the pain affecting her ability to skate and chance to live a regular teen life, the 14-year-old has tried to stay positive.
"I'm not letting it stop me from skating and doing what I love."
Alyea's family has set up a GoFundMe account for support with medical expenses.