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Finding a cure for Finn

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3.5 from 2 votes
Monday, September 25, 2017

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For Allison and Jonathon Muedder, the hardest part about learning their 3-year-old son, Finn, had Hunter Syndrome was the fact that there wasn't a good treatment and, even worse, there wasn't a cure.

"We often say we felt like we were given a death sentence," Allison Muedder said.

The SouthPark couple is hoping experimental gene therapy can save their son and the estimated 500 other young boys in the U.S. suffering from this rare genetic disease. The only obstacle: $2.5 million to fund the clinical trial.

According to Muedder, boys with Hunter Syndrome are missing an enzyme used to break down cellular waste and when that waste builds up, it leads to progressive damage throughout their bodies. Some never develop speech, while others learn like a typical child then begin losing those skills. They eventually lose the ability to walk, talk and eat. Most do not live to see their teen years.

Every Wednesday, Finn undergoes six hours of enzyme replacement treatment at Levine Children's Hospital, but it just buys him time. What he really needs is a cure and gene therapy could be the answer. Muedder said researchers are in the final stages of developing the first gene therapy clinical trial for Hunter Syndrome, all they need is the money to do so.

"It's as close to a cure we're going to get for these boys," Muedder said. "Funding this trial is Finn's best chance at a normal life and really just a life in general because this disease is terminal."

Project Alive, a nonprofit dedicated to finding a cure for Hunter Syndrome, has already raised more than $500,000 through donations on its GoFundMe page and other fundraising efforts, but there is still a long way to go.

That's why John and Martha Fisichello, owners of Mario's Italian Restaurant, are stepping in to For Allison and Jonathon Muedder, the hardest part about learning their 3-year-old son, Finn, had Hunter Syndrome was the fact that there wasn't a good treatment and, even worse, there wasn't a cure.

"We often say we felt like we were given a death sentence," Allison Muedder said.

The SouthPark couple is hoping experimental gene therapy can save their son and the estimated 500 other young boys in the U.S. suffering from this rare genetic disease. The only obstacle: $2.5 million to fund the clinical trial.

According to Muedder, boys with Hunter Syndrome are missing an enzyme used to break down cellular waste and when that waste builds up, it leads to progressive damage throughout their bodies. Some never develop speech, while others learn like a typical child then begin losing those skills. They eventually lose the ability to walk, talk and eat. Most do not live to see their teen years.

Every Wednesday, Finn undergoes six hours of enzyme replacement treatment at Levine Children's Hospital, but it just buys him time. What he really needs is a cure and gene therapy could be the answer. Muedder said researchers are in the final stages of developing the first gene therapy clinical trial for Hunter Syndrome, all they need is the money to do so.

"It's as close to a cure we're going to get for these boys," Muedder said. "Funding this trial is Finn's best chance at a normal life and really just a life in general because this disease is terminal."

Project Alive, a nonprofit dedicated to finding a cure for Hunter Syndrome, has already raised more than $500,000 through donations on its GoFundMe page and other fundraising efforts, but there is still a long way to go.

That's why John and Martha Fisichello, owners of Mario's Italian Restaurant, are stepping in to help. They're hosting a fundraiser on Oct. 14 from 11 a.m. to 11 p.m. at the restaurant, located at 2945 Matthews Weddington Road in Matthews, with proceeds going to Project Alive. There will be music, food, a bounce house, corn hole tournament, kids hockey, a silent auction and a raffle. King of Pops and Queen City Pretzel Factory will also be there.

The Fisichellos are longtime family friends of Allison Muedder, who once worked at Mario's along with her mother. They said they were devastated to hear about Finn's diagnosis and felt obligated to do something.

"Finn is so cute. He's such an adorable and lively little boy," Martha Fisichello said. "We've seen Allison grow up, so to see her have a family of her own and to have this happen to her family ... it's heartbreaking."

"Day to day, we all have challenges in our life, but when you see something like this, you realize you don't have any problems," John Fisichello added.

The couple has been sending the Muedders food from their restaurant every Wednesday, but thought a fundraiser would be the best way to build awareness about Hunter Syndrome and raise the money to find a cure.

"The more exposure we get, the more people we touch," John Fisichello said. "I mean, we are looking to find the person who knows a person and all of a sudden it's funded and that kind of thing doesn't happen when it's kept a secret."

Allison Muedder said she's grateful the Fisichellos are looking out for her family.

"It's just a sweet story of community and growing up together," she said. "It's super humbling to have people who are so willing to enter into our story and raise money and save Finn."

Visit wwww.projectalive.org to learn more about Hunter Syndrome. Visit www.gofund me.com/projectalive to donate.

Author: Karie Simmons
Source: The Charlotte Weekly
3.5
3.5 from 2 votes
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