Our Story: Why We Built SJIAHelp

This Is Corbin’s Story #

Corbin is 8 years old. He lives at the beach. He loves video games, swimming in the ocean, and playing on the playground.

In August 2024, Corbin was diagnosed with systemic juvenile idiopathic arthritis (sJIA).

We were incredibly lucky. We had an amazing team of doctors at Johns Hopkins who recognized what was happening quickly. Not all children with sJIA are that fortunate. Many families wait months or even years for a diagnosis, watching their child cycle through fevers, joint pain, and exhaustion without answers.

We were grateful for those answers. But diagnosis was only the beginning.

What Came After #

The months that followed involved hospital stays, missed school, insurance appeals for medication, and the anxiety of not knowing when the next flare would come, or which treatment would finally work.

When Corbin returned to school on high-dose corticosteroids, the changes in his appearance were startling to classmates and adults alike. His face was puffy. He looked different. He didn’t always recognize himself in photos.

Making that transition harder was the fact that most people, including many adults, had never heard of sJIA. We struggled to explain what was happening in terms that were accurate but accessible.

The Book We Couldn’t Find #

We searched for a children’s book that could help explain sJIA to Corbin’s classmates, his teachers, and to Corbin himself.

We couldn’t find one.

So we wrote it.

Corbin and the Helpers Inside His Body: A Story About sJIA is the book we needed. It explains the immune system through the metaphor of “helpers” who sometimes get too excited. It validates the emotional experience of living with uncertainty. It asks for empathy, because everyone has hard days that others can’t always see.

Why SJIAHelp #

SJIAHelp exists because the information is scattered, the awareness is low, and families navigating a new diagnosis deserve a clear starting point.

We are not doctors. We are a family that has lived this, the waiting rooms, the lab draws, the “I don’t know how I’ll feel tomorrow” conversations with an eight-year-old.

SJIAHelp is our small effort to make the path a little easier for the family that comes after us.

Have a story to share or a resource to suggest? Reach out.