Your Healthy Family

Aug 30, 2012 11:11 AM by Marissa Torres

The fight of his life

Living with Muscular Dystrophy isn't easy. For one Falcon man, not only has he battled the debilitating disease, but he's also seen a handful of his siblings suffer the same fate.

For that reason, Donavan Decker says it's fight he's not willing to give up.

At the age of 16, Decker was diagnosed with Limb Girdle Muscular Dystrophy. Now, the once active South Dakota native is fighting the biggest battle of his life.

"It's just been, pretty much a big obstacle in a way, you just have to deal with it," says Decker.

Around the same time Decker was diagnosed, so were 4 of his 7 siblings. Decker says his parents didn't have MD, but were instead carriers.

"Sometimes you get mad and sometimes you don't. But you still... You have to work to live a normal life. That's one thing I've really tried to do, is basically live a normal life."

Through it all, Decker has been a vocal advocate for the disease. He's helped MDA raise money for research, served on the National Institutes of Health, and even made history when he was the first person with Muscular Dystrophy to ever receive gene therapy. The trial may have been short live, but that hasn't stopped Decker.

"If it wouldn't be for what Jerry Lewis started 40 or 50 years ago, we would not be in the position we are now to where we could talk, even the possibility of a cure."
It's that hope that Decker and his family continue to cling to. This past summer, Decker lost his sister to Limb Girdle. He also has two nieces with battling the disease.

You can help make a difference in the lives of people just like Donovan Decker by tuning in to the annual MDA Telethon. It'll air on Sunday, Sept. 2nd on KOAA News 5.

 

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