DECATUR- Duchenne Muscular Dystrophy: it's a disease that rapidly degrades muscles. But the disorder has brought two central illinois families together to give each other help and hope.
Video games can offer an escape from reality, but for 14-year-old Alex Johanning, they offer more than that.
"It is kind of hard to go upstairs," Alex says. "It's hard to go up big steps."
Alex might never experience driving fast on his own.
"It was very heartbreaking," says Vicki Moore is Alex's grandma and caretaker. "The hardest thing is to see him not go out and do some of the things other kids can do."
They learned when he was five years old, he has Duchenne's muscular dystrophy.
"As they progressively get older, the muscles progressively get weaker and eventually it does start to effect their heart and their lungs," says Allen Hunt. Hunt knows all about it. His son Jacob had the disorder.
"There wasn't really anything we could do. There's no known cure."
At the age of 18 Jacob died this past October. After Jacob's death hunt reached out to Alex to offer help. Now when Alex has trouble getting around he can use Jacob's electric wheelchair.
But Alex doesn't need it all the time. He's still walking at age 14, when most boys with Duchenne's can't by age 10.
"It has very much slowed down the progression,"says Moore.
A clinical drug trial through the Muscular Dystrophy Association is helping him move forward.
"(It) helps me keep walking and helps me a lot," Alex says.
But he dreams of the day they find a cure.
"(I'd be) very, very happy. I would jump around all over the place,"Alex says.
The Muscular Dystrophy association is sending Alex to camp this summer and as we've mentioned funds research into medicine like the one that keeps Alex walking and one day a cure.
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