Alyea Rourke and her mom, Lynda, relax at home with Panda, their 6-year-old Shih Tzu, in between doctor appointments, ice skating and school.

Alyea Rourke and her mom, Lynda, relax at home with Panda, their 6-year-old Shih Tzu, in between doctor appointments, ice skating and school.

Photo by Deb Jacques


Teen continues to battle rare bone disease

By: Mary Beth Almond | Rochester Post | Published November 19, 2019

ROCHESTER — At first glance, you’d never know 15-year-old Alyea Rourke’s body is at war battling an invisible disease that affects one in a million people.

The teen, a competitive figure skater at Onyx Ice Arena in Rochester, has chronic recurrent multifocal osteomyelitis, a rare bone disease that causes inflammation of one or more bones when the immune system wrongly attacks normal bone in search of germs and infections.

Alyea’s symptoms — such as chronic pain, swelling and bone lesions, to name a few — come and go, often without any warning. When they do appear, Alyea said, it feels like her bones are being hit with a hammer, followed by shooting, pulsing pain in her head, back, hips and/or legs.

“I know how to hide it pretty well,” said the teen, who lives in Clinton Township. “At school, when I’m sitting at my desk and feeling a sudden pain flare up, I try and play it cool and remember that I’m not alone and I can get through it.”

CRMO is often called an invisible illness because like Alyea, many of the children affected appear fine, but they are actually dealing with high levels of pain and frustration.

“It is definitely deceiving when you see someone with an invisible disease, because they seem like a normal teenager, but you don’t know what they are going through. You don’t know their backstory,” Alyea said. “When you look at me doing normal activities at the rink or something, my coach and my friends will be like, ‘Why can’t you do this?’ I will be like, ‘I have appointments. I am in pain right now. My body is not 100%, and it’s not feeling well right now.’”

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

The current treatments, said her mother, Lynda Rourke, are costly — at nearly $2,000 per injection — but they are improving Alyea’s quality of life.

“After my infusions, I’m feeling so well that I will just bounce around or take my dog, Panda, for a walk. I’ll be running and dancing, and a half an hour later, it will just hit me and I’ll be completely fatigued,” Alyea said.

To help with medical costs, the Rochester community rallied around the Rourke family during the “Fight the Flare” bowling fundraiser at Classic Lanes in Rochester Hills in April, which the Rochester Post wrote about.

Following the article, Lynda said, her daughter was gifted a therapy massage chair from Relax the Back in Shelby Township.

“It was a big blessing,” Lynda said. “It’s been really helpful, because desensitizing her body is one of the biggest things to help her stay mobile and be able to do normal activities. She’s able to relax in that (chair) when her nerves are fired up or she’s having a rough day.”

Although the chair has helped Alyea temporarily relieve some of her symptoms, Lynda said her daughter’s pain, and her medical bills, are constant.

“Once you hit your deductible you’re OK, but once the new year starts, it becomes rough again. It just depends on the year, and the doctor, and the timing. We see everyone from rheumatologists and infectious disease doctors to normal pediatric physicians each month,” she said.

A GoFundMe page has been created to help assist the Rourke family with medical bills. At press time, the page had raised $3,886 of the $8,000 goal.

To donate, visit Alyea’s GoFundMe page at www.gofundme.com/girl-fights-crmo-daily.