Our Story
Jax is four years old.
He’s loud, vibrant, and full of life. He loves Paw Patrol, fire trucks, riding quads with us, being outside, and most of all — baseball. If there’s a ball to throw or dirt to run through, he’s in it. He’s happy. He’s loving. He’s ours.
Jax was diagnosed with Sanfilippo Syndrome Type B (MPS IIIB), a rare and progressive neurodegenerative disease. It steals skills. It steals time. And time is not something we have.
When we received his diagnosis, we had a choice: sit back and watch… or fight.
We chose to fight.
We fight for access.
We fight for treatment.
We fight for research.
We fight to remove the obstacles standing between children like Jax and the cures they deserve.
This site exists to help people understand what Sanfilippo is, why early action matters, and how you can stand with Jax — and families like ours — through awareness, advocacy, and fundraising.
We are not waiting.
We are building the path forward.