Shining a Light on the Invisible
A Rare Disease Day story about autoinflammatory disease, invisible illness, and how one seven-year-old inspired a book to help others understand.
Written by: Jessy Wong
Every year on February 28th (or February 29th) is Rare Disease Day. A day where people with rare diseases share their stories to bring awareness to their daily struggles and triumphs. Rare Disease Day holds a special place for my family because our 7 year old Sammy has a one in a million rare disease.
Autoinflammatory disease is one of those things that sounds neat and medical on paper, but in real life it’s messy, loud and Unpredictable. It means Sammy’s immune system doesn’t know when to stop. There’s no cold, no injury, no obvious reason—his body just reacts. Inflammation shows up anyway. Pain, swelling, fevers, bone-deep exhaustion. Some days are okay. Some days are not even close.
And most of the time, you can’t see any of it.
That invisibility is what makes things complicated. Sammy is an ambulatory wheelchair user, which means sometimes he walks and sometimes he doesn’t. Sometimes he can walk but shouldn’t. His body changes day to day, hour to hour. To the outside world, that can look confusing. To him, it’s just survival. Choosing what will hurt less, what will get him through the day.
After answering the same questions again and again “Why does he need the chair? Why not yesterday? Why did you miss school?” we realized something. A seven year old shouldn’t have to explain his medical reality over and over just to exist comfortably in the world. So we did what made sense to us.
We wrote a book.
Not a medical explanation with big scary words. A story. One that uses simple language and gentle metaphors to explain how a body can get confused, how pain can be invisible, how tools like wheelchairs help instead of limit, and how he takes shots everyday. We wanted something Sammy could share with friends and teachers and grownups when words felt hard or when he was just tired of explaining.
And here’s the part that matters just as much: we didn’t do this alone.
We have found incredible, accepting friends here in Methuen. Friends who don’t question. Who don’t stare. Who just include Sammy like it’s the most natural thing in the world because it is. The teachers at the Marsh have been patient, flexible, thoughtful, and kind in ways that don’t always make headlines but make a huge difference to a child and his family. CPAM and acting out theater has provided a safe space that has built his confidence. Rangers Fut Academy has always had a spot on the team for him, some days he couldn’t play, but he was still included. We are endlessly grateful for that.
Understanding doesn’t always come from big gestures. Sometimes it comes from listening. From believing kids. From letting a wheelchair be just a wheelchair, not a conversation starter. From a classroom that makes space without making a big deal out of it.
We wrote the book to help explain autoinflammatory disease, yes—but also to say this: invisible illnesses are real. Kids with them are trying their best. And when a community chooses kindness and understanding first, it changes everything.
Sammy’s Fireflies is available on Amazon (here) and proceeds go to Boston Children’s Hospital Autoinflammatory Clinic and the Autoinflammatory Alliance.