Fundraiser to be held for teen battling rare bone disease

By: Mary Beth Almond | Rochester Post | Published April 23, 2019

 Alyea Rourke, a teen from  Macomb County, was diagnosed with chronic recurrent multifocal osteomyelitis, also known as CRMO — a rare bone disease.

Alyea Rourke, a teen from Macomb County, was diagnosed with chronic recurrent multifocal osteomyelitis, also known as CRMO — a rare bone disease.

Photo provided by Lynda Rourke

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ROCHESTER HILLS — As she glides across the ice in front of a panel of judges, you’d never guess that 15-year-old Alyea Rourke is in excruciating pain.

“It feels like my bones are being hit with a hammer or being pulled. It’s terrible,” said Alyea, a competitive figure skater at Onyx Ice Arena in Rochester. “I used to be a normal teenager, and one day it all completely changed into this terrible nightmare.”

Lynda Rourke, Alyea’s mother, said the aches and swelling came out of nowhere, first popping up in her daughter’s face at the age of 12.

Doctors, she said, had a hard time figuring out the cause. They tested for ear issues, possible infections in the jaw or teeth, temporomandibular joint disorder and just about everything else.

“We went to orthopedics, oral surgeons, (pediatricians) and finally, one day … there was so much pain and swelling that she couldn’t even function to eat. That was the final straw,” Lynda Rourke explained.

Months went by without a diagnosis from medical professionals, who constantly poked and prodded Alyea, hoping to uncover the cause of her pain. She had her blood drawn and tested, bone scans and MRIs, and even went into surgery for a bone biopsy.

After 19 months of searching, an infectious disease doctor finally diagnosed Alyea with chronic recurrent multifocal osteomyelitis, also known as CRMO — a rare bone disease.

“We were very scared,” Alyea said. “We didn’t know if it was life-threatening, but we knew it was definitely going to change my life, not for the better.”  

CRMO causes inflammation of one or more bones when the immune system wrongly attacks normal bone in the search of germs and infections. Symptoms — such as chronic pain, swelling and bone lesions, to name a few — come and go, often without any warning.

“One night you could be completely fine, and the next morning your jaw is swollen or your feet or legs are in pain — it could be anywhere,” Alyea explained. “You just have to keep pushing through it, because you don’t want the disease to get the best of you.”

The teen, who lives in Macomb County, said it’s really hard for others to understand what she’s going through.

“All they see is a perfect kid on the outside who looks completely fine and acts fine, but really, behind the scenes, I’m not fine. I put on a brave face for the world,” she said.

Because there’s no known cure for the disease, doctors are currently focusing on treating Alyea’s symptoms. She battles inflammation with oral medication, massage and physical therapy, and medical injections and infusions, and she visits her doctor weekly.

The treatments, her mother said, are costly, but they are improving Alyea’s quality of life.

“She was just now put on a brand-new infusion medication, and one infusion costs $2,000,” she said.  

Alyea also relies on her faith, along with the support of her family and friends, to push through the pain and continue pursuing her passion on the ice.

“I’ve always loved the sport — the feeling like you’re flying and you’re free when you’re on the ice,” she said. “(I really love) having that moment where I can get away from all of the drama that’s going on in my life right now. It’s just me and skating.”

The teen hopes that by sharing her story, she can inspire others with the disease and spread a little hope to those who are fighting different battles.

“I will not let the disease get the best of me and take away what I love doing,” she said.

To help Alyea’s family with medical costs, a “Fight the Flare” bowling fundraiser will be held 4-7 p.m. April 28 at Classic Lanes, 2145 Avon Industrial Drive in Rochester Hills. Tickets cost $25 per person, or $20 for nonbowlers.

For tickets or to make a donation, call (586) 494-1354 or email g-rock@att.net. To view Alyea’s GoFundMe page, visit www.gofundme.com/girl-fights-crmo-daily.

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