Just a few months ago, Juvenile Dermatomyositis wasn’t even a disease I had ever heard of. Today, JDM is something our family thinks about every single day.

Oliver is 7 years old. Before all of this, he was an active little boy who ran, played sports and did all the things a 7-year-old should be doing. Then everything started changing.

He stopped wanting to eat and would get full after just a few bites. In only two months, he lost 15 pounds. His bloodwork was abnormal, and at first we were told it could be a virus or something that would eventually pass.

Instead, he kept getting weaker.

Within a matter of months, we watched Oliver go from running and playing sports to barely being able to walk. There were countless blood draws, scans, specialists, hospital visits and so many unanswered questions.

It took about two months to finally get his diagnosis. At the time, those two months felt like a lifetime. But we now realize how fortunate we were to get answers that quickly. JDM is so rare that many doctors may never see a case, and some families spend a year or more searching for answers before their child is finally diagnosed.

Oliver was diagnosed with Juvenile Dermatomyositis, a rare autoimmune disease where the immune system mistakenly attacks healthy tissue, causing inflammation that can damage the muscles, skin and blood vessels and sometimes other organs.

Oliver is also MDA5 positive, a specific subtype of JDM that can behave differently and requires close monitoring because it can be associated with additional complications, including lung involvement.

Getting the diagnosis gave us an answer, but it was really just the beginning.

There is currently no cure for JDM. Oliver has been hospitalized numerous times, takes multiple medications every day and now has to receive monthly infusions to suppress his immune system and get the disease under control.

No 7-year-old should have to know what it feels like to spend hours getting an infusion, have constant bloodwork or take medications every day just to keep his own immune system from attacking his body.

The medications have also brought their own side effects. As a parent, that is one of the hardest parts, you know he needs these medicines, but you also have to watch what they can do to his body.

And then there is the fight with insurance.

Because JDM is so rare, many of the medications used to treat it are prescribed off-label. We have dealt with denials and delays because medications his doctors believe he needs aren’t specifically approved for JDM.  This is exactly why research matters.

These kids need treatments that are actually studied and approved specifically for JDM. They need better medications with fewer side effects. Families shouldn’t have to fight insurance companies for treatments their child’s specialists believe they need. And doctors need more research so children can be diagnosed sooner and treated more effectively.

Most importantly, these children need a cure.

Through all of it, he is still Oliver. He is funny, sweet, stubborn and stronger than any 7-year-old should ever have to be.

We are raising money for Cure JM because research gives Oliver and every child fighting this disease hope; hope for better treatments, fewer side effects, faster diagnoses and, one day, a cure.

Right now, every donation is being doubled through the Coffey Family Match, so any gift will have twice the impact.

If you can donate or simply share Oliver’s story, it means more to our family than you know.

Please click "Donate Now" to make a gift.

If you prefer to give by check, please make it payable to Cure JM and mail it to:

Cure JM
P.O. Box 45768
Baltimore, MD 21297

Please include Oliver Stone in the memo line.

Cure JM Foundation Tax ID: 35-2222262

Thank you for making such a meaningful difference.

For Oliver and every child fighting JM.