Living with Muscular Dystrophy - WKOW 27: Madison, WI Breaking News, Weather and Sports

Living with Muscular Dystrophy

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The Annual Jerry Lewis MDA Labor Day Telethon is fast approaching.

So all this week, we're sharing with you special stories about some of those living with Muscular Dystrophy and how your donation can help.

Tonight, Kim Sveum introduces us to Michael Beil of Belleville.

He's an inspirational 21-year-old with limb-girdle Muscular Dystrophy, who doesn't let his disability slow him down.

Though today, it's just a race up and down the driveway with his brother, Michael is always the motivator - determined to make the most out of his life and the lives of others.

"Despite being in a wheelchair and having been diagnosed with MD, I've been able to continue on and contend and persevere, never giving up," Michael says.

It hasn't always been an easy road.

Michael was seven when he was diagnosed with limb-girdle MD.

His mom says his baseball coach noticed he was having a harder time running the bases. 

"She came up to us one day after practice and said 'you may want to have his muscles tested by the doctor'" mom Lori Beil says.  "It was completely devastating, it's just something you never expect your child to have."

"I was running around when I was younger and doing all the normal activites, but then increasingly I started to get weak, and that's what limb-girdle will do," Michael says.

Limb-girdle is a rare form of Muscular Dystrophy.

Michael is missing a glyco-protien in his muscles called adhelin.

The muscles around the shoulders and hips gradually deteriorate first, thus the name limb-girdle.

It's a genetic disorder which affects Michael's younger sister as well. 

But together, this family has adapted - whether it be finding ways to entertain themselves or finding ways to use all the space in their home. 

Despite some of the obstacles, the Beil family is thankful for a lot - The Muscular Dystrophy Association being one of them.

Lori says the support groups they provide have been wonderful.

"Being able to get together with other families that had the same experience..." Lori says.

And of course, the kids love the MDA Summer Camp.

"They just really enjoy being with the other kids who have MD, and connecting, and developing friendships," Lori says.

Developing friendships is something Michael embraces, and he's constantly working to make the world around him a better place.

"What can I do to change the lives around me even though I am in a wheelchair," Michael asks.

The pastoral studies major credits god for giving him joy and strength in his life.

He's a youth leader at his church, and often does what he is doing today - making a difference by meeting with youth, offering them encouragement and teaching them about the Bible.

"We have a strong faith in god, so that has been what has seen us through," Lori says.

And whether Michael is out teaching and helping others or he's home enjoying his passion for music, this young man is never short on inspirational words.

And he wants us all to know that it's not what's on the outside, it's what on the inside that really matters.

"I have chosen and made the decision to look to what is bright and what is shining, to the future ahead," Michael says.

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