Doors closing on MDA's adult campers

It's been eight years since Drew Soule first attended a Muscular Dystrophy Association summer camp -- and he hasn't thought of missing one since.

For Drew, MDA camp is one of the few places where kids like him can laugh, play and forget their disabilities for a few days. The 14-year-old enjoys it so much he wants to keep going as long as he can.

That's the problem.

Several weeks ago, Drew and thousands of campgoers nationwide were notified that beginning in summer 2009 MDA would no longer accept campers ages 18 to 21.

More Coverage Video MDA camp sets age limits

To Drew, who lives in St. Charles, the news translated into a hurried deadline, leaving him only three more summers of his favorite pastime. For some of his friends, it would be even fewer.

At first, he was confused. Then angry.

Now he's protesting.

"I look forward to camp every year," Drew said, "and hopefully I'll be able to look forward to it until I'm 21."

According to the MDA, based in Tucson, Ariz., nearly 5,000 children and adults attend its camps across the country each summer; roughly 8 percent are 18 or older. About 140 children, many from Northern Illinois, attend camp in Hudson, Ill., where Drew goes each summer.

MDA reluctantly decided to limit enrollment to ages 6 to 17 after it became increasingly difficult to find an insurance provider willing to cover the wider range, spokesman Bob Mackle said.

"As you can imagine, there's a lot of concern about mixing what are technically adults with children as young as 6 years old in an overnight camping situation," he said. "What we don't want to do is risk losing our entire summer camp program because we can't insure them."

Mackle declined to respond to more specific questions about MDA's previous insurance arrangement or provider. But he emphasized MDA spent years trying to find a different solution.

Among considerations was the idea of having separate camps for adults and children, but the cost was too high and there were other insurance issues. MDA also didn't want to take away funding from its primary mission: research.

"Believe me," Mackle said. "We've talked around this a million times from every angle we could think of. Obviously we'd like for people to be able to go (to camp) longer if we could, but it's just not feasible."

Muscular dystrophies are a group of genetic diseases characterized by progressive weakness and degeneration of muscles that control movement.

The change in the camp policy stunned Drew, as well as hundreds of other campers across the country.

They've responded by launching a movement to protest the change through petitions, letter-writing and campaigns for media coverage. Their base is the social networking site Facebook.com, where they run a group called, "I'm getting kicked out of MDA camp. And I'm not alone." The public can help by contacting MDA, the protesters say.

If you ask Drew, there's good reason to be passionate.

At camp, everyone gets to be themselves. They bunk in cabins with each other and their counselors. They go swimming. They tell stories. They explore the outdoors and even pull pranks on each other (like the time a toilet mysteriously appeared on a cabin lawn late one night).

"The thing I remember most about (camp) each year is just the joy," said Drew, who at home relies on his family to help him get dressed and tie his shoes. "People don't have to worry about being in a wheelchair or really even think about it. Everybody's the same and they can just unwind."

Drew estimates he's made hundreds of friends over the years, friends who keep in touch year-round. Noticeably well-spoken for his age, he also says he has grown more self-confident and has come to worry less about asking a classmate at Haines Middle School to help pick up his book or open his locker.

Fellow camper Dan Schmidt says Drew would experience even more personal growth as an adult camper.

Schmidt, a 2006 graduate of St. Charles East High School, started attending MDA summer camps when he was 13. By the time he was graduating high school, he says, the support and advice of fellow campers had become an invaluable resource for enrolling in college and finding and filing for financial assistance.

Schmidt is now a sophomore at Columbia College Chicago, studying filmmaking. He's also won several community service awards in the Tri-Cities area.

"Honestly, I couldn't have done those things without the support of camp and the people there," Schmidt said. "They have really inspired me and done a tremendous amount for me."

This will be Schmidt's last summer at camp because he's 21. But he will also be "graduating" alongside many others who aren't yet as old.

Mackle said MDA made it a priority to announce the age restriction a year early so families could adjust, and to give those who won't be able to return one last summer together.

Mackle added that, generally speaking, the age restriction has been "fairly well-received" among parents and camp associates.

"People are sad about it and express sorrow," he said. "But a lot of times when we talk to them and give the reasons, they're accepting of the reality of why we had to do it."