Dad raises money for 3-year-old son's rare disease

A local dad took to social media to raise money towards research to hopefully find a cure for the disease his son suffers from.

CHARLOTTE, N.C. -- Catch Finn Muedder in his yard and you'd think he's just another 3-year-old.

But his parents know better. Finn has an extremely rare genetic disorder found mostly in boys.

It’s called Hunter’s Syndrome and without a medical breakthrough, it will end Finn’s life – most likely in his early teens. The disease affects about 500 boys in the U.S., an estimated 2,000 worldwide.

Researchers believe they’re nearing a cure, but not without expensive new research. It’s money Finn’s father doesn’t have – so he used what he knew to spread the word.

Now, the world is taking note.

At times, it’s hard not to be overwhelmed by that but to look at Finn, it's clear he loves life and he’s such a joyful kid.

Researchers believe they’re close to a cure, but they lack the funding to know for sure.

"My initial reaction is just feeling helpless," said Jon Muedder, Finn's father.

At first, Finn’s father didn’t know what to do.

"I’m not a doctor or lawyer but I do know how to tell stories," Jon said.

So he decided to tell Finn's story. Using his film school degree and editing chops, Jon made an eight-minute video about his son and others suffering from Hunter’s Syndrome.

"It’s our only shot is to get our story out there and raise awareness for a cure that’s sitting there in the lab," Jon said.

Since posting the video two months ago, Finn and his parents have inched toward their goal – raising $2.5 million to pay for new research.

"We’ve raised almost $450,000 thousand dollars but that sounds like a lot it’s only 20 percent of what we are trying to raise," Jon said.

They need to hit their $2.5 million November. Otherwise, important experiments won’t happen.

Meanwhile, Finn's parents are teaching him every thing they can think of, knowing their three year old won’t always be able to learn.

Finn and his family have established a GoFundMe page where people can contribute to curing Hunter’s Syndrome once and for all. 

You can also watch the touching video that Finn’s father produced.

© 2017 WCNC.COM


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