02/28/2026
It’s another Rare Disease Day.
The theme this year is "More Than You Can Imagine." And honestly? That feels like our daily reality.
If you’ve been following along here at the Cafe, you know our family’s diagnoses aren't just a list of medical terms. They are Bobby, Andy, and Logan navigating life with ARS, epilepsy, autism, and OGT-related disorders. It’s Jim managing brittle diabetes and seizures. It is, quite literally, more appointments, more stress, and more vigilance than most people can imagine.
We are a Team.
We don't do this as individuals—we do it as a unit. Jim and I have been in these trenches for decades, and we’ve learned that the only way through the "unimaginable" is together.
Our faith keeps us anchored. When the behaviors are all-encompassing, the sleep is non-existent, or the seizures are frequent, our faith is our "get up and go" - a spiritual cup of coffee. It’s the reminder that even when we feel weak, we are being carried by a mighty God.
In case you didn't know:
There are 300 million people worldwide living with a rare disease. 72% of those are genetic, and 70% start in childhood. We aren't just statistics; we are families who rely on teamwork and God to get through the day.
I'm getting the Rare Disease Day page on our site updated and I'll add that link in the comments.