CHARLOTTE, NC (WBTV) - Three-year-old Finn has a rare and terminal genetic disorder. His mom, Allison Muedder, found out last year.
"My husband and I are now at the heart of a worldwide battle to discover a cure before he's gone," she said. "It's a race against the clock."
The disorder is called MPS II/Hunters Syndrome.
It almost exclusively affects boys.
Less than 500 boys in the United States.
Boys, like Finn, are missing an enzyme used to break down cellular waste. When that waste builds up, it leads to progressive damage throughout their little bodies. They develop normally until two or three years old, then start showing a range of serious problems.
Many start losing skills like walking, talking and eating. Most do not live to be a teenager.
Finn receives enzyme therapy at the hospital every week. It's not fun, to put it nicely. Takes hours. But Finn is a champ. He's a happy-go-lucky little guy. His parents are creative – Allison and Jon call these hospital days, "juice days." Little less scary of a term for a child.
"We're trying to spread the word through video," Allison said. "My husband has a local video production business, so we're currently filming the stories of six families across America – ours as one – who suffer from this awful disease. We want to ultimately raise money to fund the first gene therapy trial in the country."
It would be the first-ever human trial for boys with this disease.
The trial is already in the works. Allison says doctors at Nationwide Children's Hospital in Ohio are in the final stages of developing the first clinical trial for gene therapy for boys with Hunters Syndrome.
"We are thrilled!" Allison said. "We feel like we're living on the cusp of research and it's really just a matter of whether Finn will be the first generation to benefit, or if we make it possible for the next generation of boys."
In talking with Allison you can tell she is desperate for Finn, of course, but also has a heart to do this for other kids.
"We've seen several families lose their own kids to this disease even since Finn was diagnosed," she said. "There have been so few studies and trials conducted... we want to change that."
Allison and Jon also have two young girls.
As Allison and Jon work on their video and push to help fund this trial in time to save their son, they ask you just remember the name of the random illness that crept in and took over their lives: Hunter's Syndrome.
"It's real, it's nasty, it's taking our son, and…" Allison said, "…we're motivated to make a difference."
*Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Gr antham follows closely on her Facebook page. It was first
published there – which is why it's written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story (and updates on all #MollysKids) here.