When people hear Benjamin’s diagnosis, they often look at me and say…

“I’ve never heard of that before.”

And honestly? Neither had I.

Benjamin has something called an HNF1B deletion, also known as 17q12 microdeletion syndrome. It’s rare, and at first, it felt overwhelming trying to understand what it meant for him.

So here’s the simplest way I can explain it.

This condition affects how certain parts of his body develop and function—especially his kidneys.

That’s why Benjamin has cysts on both kidneys, and why his kidneys don’t work the way they should.

Right now, his kidney function is about 19%.

That number is something I think about every single day.

But this diagnosis isn’t just about numbers or medical terms.

It’s about a little boy who still wakes up ready to play.
A little boy who laughs, explores, and lives life with so much joy.

It’s about balancing two realities at once.

In one moment, I’m managing medications, appointments, and lab results.

In the next, I’m watching him run around, laugh uncontrollably, and just be a kid.

And that’s the hardest part to explain to others.

Because on the outside, he looks okay.

But on the inside, his body is working so much harder than it should.

This diagnosis has changed our lives in ways I never expected.

It has taught me more than I ever wanted to know—but also shown me strength I didn’t know we had.

And through it all, Benjamin continues to amaze me.

He doesn’t let this define him.

He just keeps going.

So while HNF1B deletion is a part of his story…

It is not his whole story.

He is still our miracle.
Still our joy.
Still our little boy.

And we will keep fighting right alongside him, every single day.