When five-year-old Lucy was diagnosed with juvenile dermatomyositis in March 2022, her parents’ world shifted overnight. Once a bright, fearless child, Lucy suddenly faced a medical landscape filled with IV pokes, blood draws, methotrexate shots, MRI machines, and long hospital stays.
For months, life revolved around IVIG infusions lasting six to eight hours each. The treatments left her drained, plagued by migraines, nausea, and days of exhaustion. “It felt like her childhood was disappearing into a black hole of recovery days,” her parents recall.
Even more troubling, Lucy wasn’t responding to the traditional treatment protocol. Despite receiving regular IVIG infusions, her muscle weakness worsened. Her immune system was depleted, and each round of treatment brought stronger side effects. Over the course of that year, Lucy missed 39 days of school. Her parents began to lose hope that a solution existed for such a rare disease.
In September 2023, Lucy’s physician proposed a new path: abatacept, a biologic therapy marketed as Orencia. The recommendation came with challenges. Insurance companies rarely approve abatacept for children with JDM, and even among approved cases, not all patients respond. Nonetheless, her doctor submitted an appeal, and against all odds it was granted.
The results were swift and striking. Lucy’s new infusions took just 30 minutes, and the side effects were minimal. Within four to six months, her strength began returning. The once-persistent rashes faded, and she gradually tapered off prednisone and mycophenolate. Her most recent MRI revealed muscle regeneration where inflammation and atrophy had once appeared. While responses to abatacept differ from child to child, Lucy responded in a remarkable way. Today, Lucy shows no signs of active disease.
What the family learned later was that Lucy’s turnaround was built on years of groundwork laid by Cure JM Foundation. Long before Lucy’s diagnosis, Cure JM had funded abatacept trials in juvenile myositis, critical research that allowed Lucy’s physician to consider the drug as a treatment option.
“Abatacept gave us our daughter back,” Lucy’s parents say. “We owe a debt of gratitude to the families and donors who gave long before we even knew we’d need their help.”
Now, Lucy’s family gives back to help others. They’ve become active fundraisers and donors to Cure JM, driven by their firsthand experience of what medical research can achieve.
“The dollars Cure JM is investing right now in CAR-T therapy, JAK inhibitors, biologics, nucleic acid therapies, and other next-generation treatments might not help Lucy,” they said. “But they could mean everything to the next family waiting for answers.”
As the Holiday Challenge continues, the family hopes others will join in supporting Cure JM’s mission. Every contribution, they emphasize, helps turn hope into healing, and these breakthroughs don’t happen by accident. They happen because someone cared enough to pay it forward.
