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Sarah Schwegel shows strength while living with muscular dystrophy

Former MDA national goodwill ambassador Sarah Schwegel is excited about a new drug breakthrough

ST. LOUIS — Just because you lose the use of your muscles, doesn't mean you lose hope.

"We're making it work," says Sarah Schwegel. Sarah has always let hope shape her future. 

Now 28, she is a friend and mentor to young girls like 11-year-old Tilly McRoberts.   After all, when you're Tilly's age and still figuring out where you're going, it's helpful to ask someone who has been there before.

Sarah was born with SMA, Spinal Muscular Atrophy, a disease the progressively weakens the muscles to the point, that you can't even cough. It makes a common cold uncommonly frightening.

"I spent a lot of time in Children's Hospital," Sarah recalls.

Even opening a bag of chips is nearly impossible.

But the times she remembers most is that week every summer at MDA Camp.

"I got to go be with all of my friends, be away from my parents and have someone I knew and trusted to take care of me," Sarah explained. "And that was so important for me as a disabled child because I got to learn what it was like to be independent."

Through our local MDA telethon broadcasts, we've watched Sarah grow up. She'd be right by my side every Labor Day.

And then Sarah went national.

"I told everyone at MDA that I think you're so adorable," host Jerry Lewis told Sarah on the 2001 National MDA Telethon.

That year, Lewis asked Sara to be MDA's Goodwill ambassador. Sarah was the face of the fight. Not just for St. Louis but for the entire country.

"I got to travel across the country and speak with all of the sponsors for the Muscular Dystrophy Association," remembers Sarah.

It turned out to be good training for what was to come.

After getting a bachelor's degree at Maryville University and a Master's in Public Administration at St. Louis University, Sarah now works at the non-profit Paraquad helping people with disabilities become the best advocates they can be.

"My prayer was always that God would keep her happy and give her work to do," says Sandy Kline, Sarah's mom. "And he listened."

And apparently, he's still listening.

A new drug called Evrysdi has been a breakthrough.

"I can now lift my arm up off of my armrest which is something I haven't been able to do since I was a small child," Sarah told us.

And for the first time ever, she can open a bag of chips.

Throughout her life, there have been plenty of obstacles in her way. But for Sarah Schwegel, those obstacles were just stepping stones.

She chose hope, making anything possible.

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