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WEST VALLEY CITY — For the Robyler family, leaving their home each day takes time and preparation.
"I have FSH Muscular Dystrophy," said Jordan Roblyer, 16. "It affects my muscles and stuff."
Jordan's mother also has it.
"The kind of muscular dystrophy we have is not supposed to be this aggressive," Diana Roblyer said.
It's slowly eating away at their muscle tissue and affecting lung function. Diana noticed signs after her first pregnancy, but Jordan's symptoms began much earlier in his life.
"He just started not running as fast as the other kids," she said.
Jordan loved riding his bike, but the disease robbed him of his favorite pastime.
"Maybe two years ago, I just couldn't ride anymore," Jordan said. "It was harder to keep my balance on (the bike)."
The disease is hereditary, but Diana hoped it wouldn't affect her children.
"It was devastating and really sad," she said through tears. "He got to see his friends playing soccer, doing the things normal boys do, and he didn't get to go and do that."
That's why their involvement with the Muscular Dystrophy Association is so important to them. Jordan attends camp each summer with other kids just like him.
"We stay in cabins," Jordan said. "We just hang out in the woods and play games."
"He came back and was so excited, and that' s all he talked about it," Diana said. "He talked about how it was the best time of his life."
Once a year, members of his muscular dystrophy fundraising community come together as "Team Jordan" and participate in the MDA muscle walk. All proceeds go to finding a cure and funding more summer camps.
"It's awesome," Jordan said. "People are really nice."
The Robylers are determined to make life as normal as possible for Jordan. He has chores and just got a part-time job taking tickets at the local movie theater. He even got asked to the Hunter High School dance by a classmate.
"She asked me and it was really fun," he said.
The future is uncertain for this mother and son. The family says Jordan's muscular dystrophy seems to be advancing more quickly.
"We don't really know," Diana said. "(The doctors) told us it's kind of scary how fast his is progressing."
As the family of four sat around their kitchen table playing cards, they hope moments like these continues for years to come — or until a cure is found.
KSL 5 News will be at the MDA camps this summer bringing you the stories of Utah children living with the disease. On Saturday, the Muscular Dystrophy Association and KSL are teaming up for the annual MDA ride, which takes donations. All money raised goes straight to research and funding programs for kids with muscular dystrophy.
