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Child's malady inspires colleges to do their part

Almost as soon as their little bundle of joy arrived from Russia, Jessica and Shawn Arndt knew that something was wrong with their newly adopted baby boy.

His calves were enlarged. He didn't take his first step until 17 months. He fell down more than the typical toddler.

"They kept telling us, 'Don't worry,' " Jessica Arndt recalled. "We said, 'No, we're worried.' Finally, we just said, 'Can you test him for something?' "

Their baby, Joshua, had Duchenne muscular dystrophy, a genetic disorder that progressively weakens the muscles.

Joshua, now an easygoing preschooler who loves Spider-Man and Scooby-Doo, will be the center of attention at the Buffalo State College homecoming football game at noon Saturday.

The school is one of more than 200 schools participating in "Coach to Cure MD" to raise money for research for a cure and awareness for children such as Joshua. A similar fundraiser will take place in the tailgating area during the University at Buffalo homecoming game Oct. 3.

Volunteers at the Buffalo State game Saturday will hand out printed material and collect donations. Fans will also be asked to send a text message to donate $5 to the cause.

"This is a national program, so many, many college coaches across America are doing this," said Tom Koller, Buffalo State's senior associate director of athletics. "We're just playing our small part at Buffalo State."

The Arndts, of Niagara Falls, want other parents to know more about Duchenne muscular dystrophy than they knew when they discovered Joshua had it more than two years ago.

Duchenne, one type of muscular dystrophy, affects 1 in 3,500 boys. It is caused by an absence of a protein, dystrophin, that maintains muscle cells. Most boys with Duchenne muscular dystrophy lose their ability to walk before their teenage years.

It is passed on by genetics but can also be caused by a random spontaneous mutation.

"Right now, what we're concerned about is it's a progressive disease, and, as time goes on, his illness is going to be more serious," Jessica Arndt said of her son, now 4.

The Arndts adopted Joshua from Russia when he was 10 months old after years of trying to have a child. Jessica Arndt said doctors first believed that his development was delayed because of his history. But even after Joshua was diagnosed, Jessica Arndt said, she found an astounding lack of information about Duchenne in the area.

"They left us with no hope," said Jessica Arndt, a veterinary technician. "They told us, literally, 'Take him home and love him.' "

The Arndts travel to Cincinnati Children's Hospital Medical Center for Joshua's treatment twice a year, and they are spreading the word about Duchenne muscular dystrophy.

"The awareness isn't there, but it is a serious thing," Jessica Arndt said. "The positive thing is that they really feel that they're getting close to a cure. There's a lot of promising trials out there right now that are in their final phases."

For information online, go to www.coachtocuremd.org.

e-mail: djgee@buffnews.com

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