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Over the last few years, much of our life has centered around supporting Boy1 and meeting his needs in the best ways we know how. That has looked like speech therapy for apraxia, medication to support attention and focus, occupational therapy for executive functioning, using an AAC device to help him communicate, and filling our home with visual schedules to support routines and memory.

When Boy1 was diagnosed with a rare genetic disorder, we were introduced to the world of SETBP1. We joined support groups, connected with other families, and even participated in research studies aimed at better understanding this condition—one that seems to explain so many pieces of his journey. There is something incredibly powerful about finding a community of people who “get it,” and we’ve learned so much through those shared experiences.

In early 2024, Boy1 was also diagnosed with epilepsy. We began noticing episodes where he would suddenly seem to “zone out” and become non-responsive. What was most surprising was that his body would continue whatever it had been doing—walking, eating—almost on autopilot. It was unsettling, to say the least. Once we recognized these moments as episodes, we either became more aware of them or realized they were happening more frequently than we thought.

We later learned these were absence seizures, a type of generalized seizure. Thankfully, they’ve been well managed with medication—a blessing we don’t take for granted. We know that for many families, epilepsy looks very different, even more now.

So when I came across the Purple Day Expo, I was immediately intrigued. It was only a few weeks away, and I wasn’t sure we could pull it together—but then I saw the location: Walt Disney World, our family’s happy place. It felt like a sign.

The Seventh Annual Purple Day Expo, sponsored by The Anita Kaufman Foundation, was held at Disney’s Coronado Springs Resort on March 27, 2026. (I’ll be sharing more about our Disney experience soon over on Traveling With My Bwuhs.) From the moment we walked into a room filled with purple shirts, costumes, and smiling faces, it was clear this was something special. There’s something about being surrounded by people who share a common purpose—it creates an immediate sense of connection that’s hard to describe. Getting to experience that alongside my sweet boy made it even more meaningful.

The morning began with a catered breakfast—complete with Mickey waffles, fresh fruit, and the most amazing everything bagel–seasoned croissants. From there, we heard from several inspiring speakers, including Laura Seeley Aguirre, co-author of Epilepsy for Dummies, and Sue Seserman, author of the graphic novel Epilectra. I picked up a copy of Epilectra for Boy1, and I’m so excited to read it with him. The story features a team of superheroes with disabilities and medical conditions—including epilepsy, diabetes, cerebral palsy, and autism—which makes it incredibly powerful and relatable.

The opening session wrapped up with a fun costume contest—something Hubs and our brother-in-law are already planning for next year!

Afterward, we explored the expo hall, which was filled with incredible resources. From seizure alert systems to a comfort stuffed otter wearing an EEG cap, there were so many innovative supports on display. I especially appreciated the resources available for parents and caregivers—it’s easy to forget how much support we need, too.

The theme, The Art of Epilepsy, was beautifully represented through artwork created by individuals living with epilepsy. It added such a meaningful and creative layer to the experience. Of course, there were also plenty of fun touches—purple wigs, beach ball giveaways, and lots of smiles.

Breakout sessions covered topics like VNS therapy (vagus nerve stimulation), medication-resistant epilepsy, and seizure first aid. There were also thoughtfully designed spaces for kids and teens, along with therapy and service dogs that brought so much comfort and joy. The day ended with a meet-and-greet with Mickey and Minnie—because what’s a Disney event without a little magic?

We left feeling inspired, connected, and incredibly grateful. I’m still working my way through all the resources we brought home, but I’m especially excited to learn more about the epilepsy registry and how Boy1’s rare genetic condition could contribute to research. It’s humbling to think that his journey—our journey—could help others in ways we may never fully see.

And while epilepsy is just one piece of Boy1’s story, this experience reminded me that we’re not alone—and that there is strength, support, and even joy to be found in the journey.

Have you ever attended an event that made you feel instantly understood or supported? What was it like?

If you’re part of a medical or special needs community, what resources or connections have meant the most to your family?