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Friday, April 19, 2024

Documentary features Gainesville teen's struggle with muscular dystrophy

Dale Ginder is 7 years old. He is from Gainesville. He loves his Gators.

And he is sick.

So his parents will be at the Phillips Center at 7 p.m. Thursday, not for their son's favorite team, but to watch a movie that may save his life.

Lelia Ginder, Dale's mother, and the College of Public Health and Health Professions present "Darius Goes West," the acclaimed story of a teenager with Duchenne muscular dystrophy, a not-so-rare genetic disorder that strips the male body of dystrophin, a structural protein needed to function.

The heart and lungs - both muscles, both deprived - race each other to see which will give out first.

According to Parent Project Muscular Dystrophy, another 20,000 boys like Dale and Darius are diagnosed with the disease each year.

This means, each year, roughly double this number of parents find that they stand a good chance of outliving their sons.

The disease progresses with speed and menace. By 7, scar tissue replaces muscle. By 9, walking requires assistance. By 14, breathing requires assistance.

Most die in their 20s. Some die older. Some die younger.

For now, DMD kills. Always.

The documentary, winner of more than 25 film festival awards, focuses on Darius Weems' first trip away from home, a cross-country attempt to get his wheelchair on MTV's "Pimp My Ride."

At the end of the film, Weems will take the stage with his travel partners and adopted family, the film's cast and crew.

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Weems turns 20 on Sept. 27. He has outlived his brother, who died of DMD, by more than a year.

Accordingly, each campus screening doubles as a celebration.

UF cheerleaders, Albert and Alberta and Gators broadcaster Mick Hubert will attend.

The event raises awareness and promotes "One Year. One Million DVDs," a campaign that generates $17 for DMD research for every DVD sold.

The film has sold about 26,000 copies, according to Logan Smalley, director and editor of "Darius Goes West." Through extensive campus touring, the crew has raised $1.6 million and logged over 100,000 miles since September 2008.

Smalley said research is exploding, and numerous human clinical trials show great promise.

"We're extremely hopeful and optimistic that a treatment or a cure for DMD is on the horizon," he wrote in an e-mail.

The screening, part of "Darius at UF," is free and open to the public, and the Ginders urge everyone to come.

Lelia Ginder said when she took her son to the pediatrician, the nurse in the office knew right away of his condition.

"I said, 'You must be mistaken.' Of course, we were shocked and not believing it for a while," she said.

There is no cure, only piles of underfunded research.

Inside the Starbucks on Archer Road, Dale Ginder's picture hangs on a bulletin board above canisters of milk, no amount of which can make him stronger.

His healthy face and radiant blue eyes don't tell that DMD can enlarge the heart, only that Dale's is very big.

"He is still in the exact same body he was in before he was diagnosed," Ginder said. "His experience of life has not changed. But it changed for us."

But there are optimists, like Josh Winheld, who was diagnosed with DMD at 4.

"When I get up everyday, it seems like a good day," he said.

Winheld lives a long way from Gainesville, yet he is like Dale. He is 31 years old. He is from Philadelphia. He loves his Phillies.

Winheld says he's hopeful for the child. Realizing that "nothing will happen the next day" brings freedom.

"You have life ahead of you," he said. "You just have to go out and live it, because if you keep worrying about what's happening down the road, you'll forget what's happening right now."

He is what Dale can grow up to be - alive, but more than that.

Winheld is an author, a speaker, an inspiration for the kind of event that will take place at the Phillips Center.

He also blogs about his day-to-day experiences, chronicling both the ups and downs of life with applesauce limbs.

March 4: Birthday time. Winheld hangs with the Philadelphia 76ers.

Aug. 1: Hospital run. An internal defibrillator sends 18 separate bolts of lightning surging through his chest.

"I thought there was a distinct possibility that I would be blogging no more," he wrote.

These are the kinds of trials that Dale will face.

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