- Who’s on your team, and how is JM part of your family’s story?
Oliver is 7 years old and has an identical twin brother, Vincent, and an older brother, Roman, who is 13. His dad, grandparents, brothers, and I, along with our family and friends, are all part of his team.
Everything started this summer when Oliver suddenly lost his appetite. He would eat a few bites and say he was full. Over two months, he lost 15 pounds. His bloodwork showed elevated liver enzymes and a low white blood cell count, and initially we were told it could be a virus or mono.
Then he started having swollen ankles and wrists, along with joint pain throughout his body. Eventually, he was struggling just to walk. This was the same little boy who had been running around and playing sports just months earlier.
After numerous blood tests, scans, specialist visits, and a hospitalization at Le Bonheur Children’s Hospital, Oliver was diagnosed with Juvenile Dermatomyositis (JDM).
As scary as that diagnosis was, learning he was also MDA5 antibody positive added another level of fear. Reading about the possible progression and serious complications, especially those involving the lungs, was terrifying. We know those complications aren’t inevitable, but as a parent, it’s hard not to worry about what the future holds.
Oliver’s treating physician at Le Bonheur, Dr. Kerstin Gerhold (Chief of Rheumatology), has been amazing throughout this entire process. I’m also incredibly grateful to Dr. Adam Huber in Halifax, Nova Scotia, who took the time to respond to an email full of questions from a worried mother he had never met. Everything was happening so quickly, and I knew so little about JDM. He kindly answered my questions about testing and treatment options, and most importantly, reassured us that Oliver was receiving the right treatment and that we were on the right track. Hearing that from someone with his experience gave us some much needed peace of mind during an incredibly overwhelming time. His kindness meant more than he probably realizes.
We were also concerned about Vincent developing JDM since they’re identical twins. Thankfully, the doctors were able to give us some much-needed reassurance.
Oliver now takes several daily medications and receives monthly infusions. Unfortunately, he’s also experienced severe side effects from treatment. Watching your child struggle not only with the disease but also with the medications meant to help him has been one of the hardest parts.
- Why did you join the Holiday Challenge?
Before Oliver’s diagnosis, I had never heard of JDM. Once I started learning about the disease, especially the additional risks associated with MDA5, I realized how much more research is needed.
We’ve also experienced how difficult it can be to get medications approved because many treatments aren’t specifically FDA-approved for JDM. Even when our doctors reassure us that they’ll work to get them approved, waiting is difficult when you just want your child to have the best possible treatment.
We’ve been fortunate enough to pay out of pocket when necessary, but I know many families don’t have that option. No parent should have to worry about whether they can afford a medication their child needs.
We joined the Holiday Challenge to raise money for Cure JM’s research, for better treatments, and hopefully one day a cure for all these children.
- What would you say to another family thinking about joining?
I would tell them to absolutely do it!
The support we’ve received from family, friends, coworkers, and even complete strangers has been incredible.
Every donation helps, but so does sharing your child’s story. Most people have never heard of JDM, and bringing awareness to the disease is so important.
As parents, there’s so much about this disease we can’t control. Being able to help fund research gives us something positive to focus on and hopefully makes a difference for other families.
- What’s one thing you wish more people knew about JM?
How serious it can be, how quickly it can change a child’s life, and how important early diagnosis is.
A few months ago, Oliver was a healthy, active little boy. Now his life includes daily medications, monthly infusions, frequent bloodwork, and specialist appointments. The severe side effects of treatment have made an already difficult situation even harder.
I also wish more people understood how difficult it can be to get a diagnosis. JDM is so rare that many pediatricians may never see a case during their careers, so it’s not necessarily something they would think to look for. Our pediatrician initially suspected a virus, which made sense given Oliver’s early symptoms. That’s why raising awareness is so important, not just among parents but within the medical community. The more doctors know about JDM and the warning signs to look for, the better chance children have of being diagnosed and treated earlier.
I also wish people knew that JDM isn’t the same for every child. Different antibodies can carry different risks, and learning Oliver was MDA5 positive made an already frightening diagnosis even scarier.
It took us two months to get answers, which felt like forever, but we’ve since learned that some families wait much longer.
These children deserve earlier diagnoses, more research, better treatments with fewer side effects, and most importantly, the chance to just be kids.
That’s why we’re supporting Cure JM.
Support Oliver here: https://events.curejm.org/goto/CureforOliver, or
Cure JM, 2026
