Community rallies around Charlotte 3-year-old fighting rare disease

CHARLOTTE, N.C. — Finn Muedder is like many playful 3-year-olds, except he’s one of only 500 people nationwide who are fighting a rare genetic disease called Hunter syndrome.

Finn is missing an enzyme that breaks down cellular waste.

His parents, Jon and Allison Muedder, had no idea until his doctor’s appointment at 2 years old.

“All these puzzle pieces were coming together for a puzzle we didn’t know existed,” Allison Muedder said. “A lot of the symptoms like big round belly because their liver and spleen are enlarged. He always had this little belly but so do lots of toddlers walking around.”

The family had never heard of Hunter syndrome and was shocked.

“Our kid is dying,” Allison Muedder said.

“Just completely devastated and heartbroken,” Jon Muedder said. “It means the disease will slowly take really all of his physical and all of his cognitive abilities, and he will probably die before he is a teenager.”

But there is hope. Gene therapy may be the answer.

The nonprofit Project Alive is trying to raise $1.5 million so clinical trials can start.

[LINK: Project Alive]

On April 28, the Team Finn Fanfest will be held at the Hendrick Motorsports Team Center, raising money for his treatment and his future.

[Team Finn Tickets]

But the Muedders said they’re on a mission to save their son and hundreds of others.

“We’ll be excited and happy to see this research moving forward and these kids have the opportunity to grow up," Jon Muedder said.

Cox Media Group