CHARLOTTE -- One 3-year-old Charlotte boy has a rare genetic disease called Hunter Syndrome.

That means Finn Muedder is missing an enzyme that helps break down a kind of sugar that builds bones and skin. That sugar, instead, builds up in his body, affecting his physical and cognitive abilities.

The Muedder family says most kids affected by this do not live to see their teenage years, so they're trying to raise money to do a clinical trial of a gene therapy that could help.

"One of the phrases that we say around our house right now is, 'What does it look like to do the next right thing?' said father John Muedder. "So we're not always looking 10 years down the road, what's the next best thing we can do, and so for us, fighting for this research is part of that."

Hunter Sydrome affects fewer than 500 boys in the U.S.

If "Project Alive" can raise enough money, the first clinical trial will be for nine boys.

To donate to their GoFundMe page, visit https://www.gofundme.com/projectalive.

The Gofundme.com site in this article is not managed by Spectrum News. For more information on how the site works and the rules visit http://www.gofundme.com/safety.