Walking for a cure

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16-year-old on 860-mile trek to raise awareness for disease

By Metz Camfield

Dillon Straub is taking everything day-by-day.

The cliché is often overplayed, but for Straub it’s how life goes.

Though only 16 years old, the Hillsdale, Mich., native has been diagnosed with limb-girdle muscular dystrophy type II, a disease doctors say nobody truly understands completely.

Accompanied by three friends also from Hillsdale, Straub is walking 860 miles to the Florida state line.

“I wanted to do something big before I couldn’t,” Straub said. “I’m supposed to be in a wheel chair by my mid-20s. It’s just something not many people have done.”

The disease is said to be extremely rare and had doctors puzzled at the University of Michigan and Cleveland hospitals for three years before diagnosing Straub with it about two months ago. Straub said the disease makes people tired a lot and basically eats away at one’s muscles.

“About three years ago, I was always tired. I’d wake up tired,” Straub said. “During baseball my arm really hurt. It hurt so bad I couldn’t even throw a ball anymore so we went to the doctors and they started doing tests. It took about three years. They said it was one thing and then said it was another thing. [Now] they think they know what it is.”

About one week after being diagnosed with the disease, Straub decided he wanted to do a walk to raise awareness of the disease and money for research.

John May, 33, one of Straub’s parents’ best friends, was present when Straub told his parents he wanted to do the walk. It was an idea they were initially reluctant to allow.

“He was talking to his mom about it and I said I’ll do it [with him],” May said. “They gave him permission to do this because I was willing to do it with him and they knew he’d be in good hands.”

Limb-girdle muscular dystrophy is a disease so rare that a cure or special treatment for it doesn’t currently exist.

“There’s only one doctor that claims any knowledge is what [the doctors at University of Michigan and Cleveland] said,” May said. “They say he’s in Italy so they don’t even know anything about it. Even the guy in Italy doesn’t know a whole lot about it. He’s the only person who claims to know it. Cleveland and U of M are two big medical centers and they’re just baffled. There’s nothing they can do about it.”

Straub and May began the trek south on June 14.

After just a few days with Straub carrying 80 pounds of gear, and May carrying 120, the duo realized they weren’t going to be able to make the trip alone.

That is when Brandon Wheeler and Jared Kennedy joined the two. Wheeler and Kennedy drive in a car with all the gear, and provide Straub and May with food and water when needed. The two will drive a few miles ahead and wait for the other two to catch up to them.

Without Wheeler and Kennedy, May said he and Straub probably wouldn’t even be in Kentucky yet. As it is, the two walk each day from 9 a.m. to 5 p.m., covering 15 miles on average.

As they walk during the day, it’s often headphones in and music on. An updated music list on his mp3 player is something Straub said he tries to accomplish when he can, and his music ranges everywhere from rap, to rock, to country.

“Sometimes you just try to clear your head and not think of anything at all,” Straub said. “Other days you’re really tired at the beginning and I try to close my eyes and just sleep as I’m walking.”

Not all shoulders on the sides of roads are the same size, and the two must be wary of the traffic around them. The wide shoulders in Lawrenceburg were a welcome sight, May said.

Their path will take them down U.S. 127 until it ends, where they will then pick up U.S. 27 as they will walk close to the Alabama-Georgia state line until they cross into Florida.

There, the group will have a two-week stay in Fort Myers, Fla., at a resort.

How they will get back home to Michigan is another question. Straub said that is something they take day-by-day, along with where they will walk and stay each day on their trip.

At night, the group usually is able to stay at hotels for free or at discount rates. They say they’ve only been to a few hotels where they’ve actually had to pay.

It hasn’t only been businesses offering them amenities though. The foursome say they’ve been surprised at how open people have been to welcome them into their homes for a home cooked meal or allow them to stay in their yard to set up camp.

“It’s so good when you’ve been on the road for a couple weeks,” said Straub as he rattled off names of meals as they came to his head.

The experience has opened his eyes to the better people and things in life despite sad and unfortunate news constantly littering the headlines.

Wheeler said they’ve had people give them $100 and $2. It isn’t always the amount of money that’s touching, Straub and the group said, it’s the thought.

“You have people who just don’t have the money and they actually give you like all they have,” Straub said.

“Sometimes the $2 means more than the $100.”

“It makes us feel good because you don’t see that every day,” May said. “You get to meet some real nice people. They go out of their way to do without, to make sure we have something.”

It’s these people and these experiences that have changed Straub’s idea of the mission of the trip.

“[Walking from Michigan to Florida] started out as the main mission,” Straub said. “But it’s not even really that anymore. It’s the people that we’ve met along the way and the people that we’re going to meet.”

E-mail Metz Camfield at mcamfield@theandersonnews.com.