02/27/2026
Rare Disease Day. Feb. 28. Wear purple or your shirts!
“Rare” is a word we use casually.
Rare steak. Rare find. Rare moment.
But when it’s a diagnosis, rare feels different.
FIRES — Febrile Infection-Related Epilepsy Syndrome — affects 1 in a million.
Nebraska has about 2.2 million people.
That means there may be only one… maybe two families in our entire state living this life.
1 in a million.
That’s about 3 seconds in a century.
Half a teaspoon of salt in an Olympic-sized swimming pool.
One single inch in a 16-mile stretch of road.
That kind of rare.
We’ve been living this “rare” life for two years. And we recently learned something that changed our understanding.
Our son didn’t develop seizures that caused a brain injury.
An infection traveled to his brain, caused a brain injury, and the result of that injury is FIRES.
For two years I unintentionally explained it wrong, because I didn’t know how to ask the question the right way.
That’s another part of rare, there isn’t much information. It’s trial and error. It’s learning in real time.
One doctor calls his brain injury “acquired.” Another says “traumatic.”
When I asked which it was, the response stunned me,
“Acquired means it happened from the inside out. Traumatic is the opposite. The end result is often the same, but traumatic brain injuries are taken more seriously in the outside world. So call it whatever you want. It doesn’t change what it is, just how people perceive it.”
Rare also means choosing a 4% chance brain surgery because what if he’s the 4% it cures?
Rare is watching your teenager go through prescribed opioid withdrawal because reducing brain swelling meant fewer seizures, and it worked, but the withdrawal was heartbreaking.
Rare is waking up every morning and being grateful he made it through the night, knowing SUDEP carries up to a 40% mortality risk in severe cases like his.
Rare is not just statistics.
It’s not just my child.
It’s every family living with a diagnosis most people have never heard of.
The sad smiles are one thing.
The annoyed glares are harder.
And truthfully, if you’ve never loved a critically ill child, you can’t fully understand. And that’s okay. Be thankful for that. Im thankful everyday that i know more people with healthy kids then not.
We don’t need pity.
We welcome prayers.
And we share because 1 in a million still matters.
Rare brought together the absolute best support system for zie and our family and for that alone, laying our heads down at night is easier.
❤️💜
