Teens bond over muscular dystrophy

After meeting at camp, visits bring Idaho boys out of their shells

Published: Wednesday, Aug. 22 2012 10:31 p.m. MDT

Friends Justin Kelley, 15, right, and Matt Lowe, 14, play a video game at Lowe's Jerome, Idaho, home while Justin's brother, Chris Kelley, 20, watches in the background.

Associated Press

TWIN FALLS, Idaho (AP) — For one afternoon, Matt Lowe and Justin Kelley were just teenage boys.

They played video games, eyes transfixed on the screen, their wheelchairs side by side as their hands clutched game controllers.

Matt, 14, was showing Justin, 15, how to play a Halo 3 mini-game called Jenga Tower.

"Don't shoot. That's not how you play the game," Matt said.

Matt pushed a button on his wheelchair to recline and get more comfortable, as Justin said: "I think I'm winning."

In an hour, Justin would have to make the two-hour ride from Matt's Jerome home back to Nampa. These treasured visits could be more frequent if Matt could travel easily, and their two families hope donations will help them buy a van Matt can ride in.

During Justin's July 19 visit, Matt's older sister, Shanna, 19, sat on Matt's bed with Justin's brother, Chris, 20. Matt's baseball cap collection hung above them, and Halo Reach and Angry Birds posters on one wall. A nightstand was stacked with games like Max Payne 3 and Gears of War 3.

Next to Matt's bed was a letter Justin wrote to Matt after the two returned to their separate homes after a McCall camp in June.

"Matt, I have sent you an extra headset. Hope it will come in handy. I have a lot of fun playing Xbox Live with you. Glad I went to camp and met you and now we are friends," Justin wrote.

The boys met at the Muscular Dystrophy Association camp, a weeklong camp for children with neuromuscular diseases.

Matt and Justin have Duchenne muscular dystrophy, a genetic condition caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptoms emerge in early childhood; the disease primarily affects boys, but in rare cases it affects girls.

Muscle weakness is one the first symptoms and can begin as early as age 3. It first affects the muscles of the hips, pelvic area, thighs and shoulders — then later the skeletal muscles in the arms, legs and trunk, and by the early teens, the heart and respiratory muscles.

Justin's father, Doug, remembers thinking that his son was just a late bloomer.

At 4 years old, Justin was having a hard time getting up and running. Then, his muscles started swelling up.

"They really want to run and play sports, but they can't," Doug Kelley said.

The Kelleys moved to Idaho about a year ago from California, and the Idaho MDA soon contacted them with an invitation to this summer's camp.

Doug describes Justin as introverted, somebody who doesn't like to be the center of attention. He prefers to stay home on most days. Justin didn't even want to go to MDA camp, and it was hard for Doug to send him. But Doug made him go anyway, stipulating that Chris attend as a counselor.

When Justin returned from camp, Doug and his wife, Tracey, said their usually quiet boy couldn't stop talking about his new friend Matt.

"My boy wants to get up and hang out with Matt," Doug said.

In the past, children with DMD were not expected to survive past their teen years. But according to the Muscular Dystrophy Association, due to advances in cardiac and respiratory care it's become common for those with DMD to live into their 30s.

As a toddler, Matt was really happy, said his mother, Alauna Block, as she pointed to a photo of her son's round, smiling face.

"When they go in the wheelchair, they don't want to be exposed to the world," Block said.

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