Tiny Baby Is Born With Rare Gene Syndrome, So Dad Makes Documentary To Help Raise Awareness

Finn Muedder has a uncommon deadly genetic illness known as Hunter syndrome. It’s so uncommon that the Three-year-old is certainly one of 500 boys within the United States with it and certainly one of 2,000 worldwide. Most with the illness don’t stay previous their teen years.

“At times, it’s hard not to be overwhelmed by that,” Finn’s dad Jon says. “My initial reaction is just feeling helpless.”

Researchers assume they could be across the nook from discovering a remedy, however with the analysis comes a hefty price. That is the place Finn’s mother and father stepped in.

“I’m not a doctor, I’m not a lawyer, but I do know how to tell stories,” Jon says. He used his expertise in video enhancing and movie to create a sequence of documentaries about Finn and Hunter syndrome.

In the video beneath, the uncomfortable side effects of Hunter syndrome are described to the viewer. Without a remedy, Finn and others will lose the potential to speak, eat, and stroll.

The mother and father have set a aim of $2.5 million to go towards analysis for Hunter syndrome. Since posting the video a few months in the past, they’ve already raised over $485,000 on the time of this posting. Family, pals, and strangers from throughout have donated to the trigger.

“We’ve raised almost $450,000, and that sounds like a lot of money, but the reality is it’s only 20% of what we are trying to raise,” Jon says. If you want to donate to Project Alive, please click on right here.

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Footage supplied by WCNC Charlotte

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