Sixth-grader an ambassador of hope

CHILLICOTHE – On the outside, there doesn't appear to be anything unusual about Jason Shane.

The Worthington Elementary School student has all the hallmarks of most 12-year-olds — he's quick with a smile, very dedicated to his friends and never met a video game controller he didn't like. Seeing him in passing, he'd likely attract no more attention than any other child encountered on any given day.

This 12-year-old, however, as much as he may like to be, is not like most other children his age. Having been diagnosed with Duchenne Muscular Dystrophy at the age of five, he often has to sit and watch while others are running and playing out of a concern that the more he exerts himself physically, the more quickly his progressive muscle degeneration will advance.

There is one thing, however, he can do that others can't — serve as a 2015 Central Ohio Local Muscular Dystrophy Association Goodwill Ambassador, getting the word out to help MDA raise funds for continued education, research and programs for those dealing with the condition. Shane was in that role over the weekend at Lowe's home improvement store on North Bridge Street thanking store staff for selling MDA shamrocks to raise money. Kroger and Dakota's Steakhouse also sold the paper shamrocks, which customers could purchase and put their name on to hang on their stores' wall.

At Lowe's, the shamrocks completely cover the wall around each of the main exit doors and line the area where store staff prepared some activities for Shane's arrival, including a balloon animal-preparing clown, an appearance by Spider Man and several projects that children visiting the store could take part in while interacting with Shane.

Shane, who his mother, Kelli Yeager-Nelson, said tends to be very quiet until you get to know him, joked around a bit when flexing his muscles and posing with Spider Man shortly after arriving.

"This is going to be so awkward and very embarrassing," he said.

Duchenne muscular dystrophy is a genetic disorder caused by an absence of dystrophin, which is a protein that helps muscle cells recover and stay strong after exertion. That absence is keenly felt.

"There's a gradual wearing of the muscle tissue and, unlike you and I, when we work out, we get a little sore and our muscles rebuild," Yeager-Nelson said. "When Jason stretches his muscles out, the muscle tissue is replaced with fat and scar tissue. This impacts every muscle in the body."

Eventually, the condition becomes very life-limiting. Shane doesn't run, and often when attending festivals or shopping in malls, he will utilize a wheelchair to limit the amount of stress on his muscles and heart. While not generally a sports fan, he says it is difficult to see others involved in athletic activity when he can't be.

Yeager-Nelson has to clearly fight back her emotions when talking about how life-limiting the condition can be — according to MDA the impact on the heart and respiratory system can make Duchenne muscular dystrophy fatal as early as the late teens or early 20s. Ongoing research, however, has contributed to that lifespan more and more commonly extending into the 30s and, in rare cases, into the 40s and 50s.

"It's all about hope," Yeager-Nelson said. "There's so many exciting things going on (with MDA research)."

Shane is playing a role in that research. Since he doesn't have all of the normal genetic markers of Duchenne and is something of an anomaly, he has been referred to the National Institute of Health to have his condition looked at more closely.

Those research dollars, as well as funds to send those with muscular conditions to fun, supportive experiences at MDA camps, come in large part from donations such as the shamrock drive. Angie Hice, of Lowe's, said as of Saturday with three days left in the shamrock sales, the store had raised around $5,100 for MDA. The store had never topped the $4,000 mark before this year.

Yeager-Nelson said she is hoping to garner enough interest to start a local support group for those with muscular conditions and their families, but that it has been difficult to find people interested because of medical privacy laws.

Finding that support, however, can be a tremendous help, she said.

"(At the time of a previous attempt to start a support group), we did meet another family who had a 5-year-old from Washington Court House who had just been diagnosed and I have to tell you that being able to talk to someone who's been there and gone a couple years beyond it, it was reassuring to me when we met people like that and we're just hopeful that we were able to give her hope that it won't just be the overwhelming heaviness forever," Yeager-Nelson said.