Disease can’t muscle into camp fun
Camp volunteer Scott Allison still keeps a picture of Bryan Rhodes in his wallet and on his refrigerator.
The Clark County firefighter vividly recalls the six rewarding years he spent with the Gardnerville teen-ager, who died four years ago at age 19.
Friedreich’s Ataxia, a form of muscular dystrophy, robbed the youth of his muscular coordination, taking the boy and Allison through a downward spiral as the disease progressed.
When they met a decade ago, Rhodes was able to walk. Allison stuck by Rhodes as a friend and camp counselor when the boy began to rely on crutches to get around. He was wheelchair-bound at the time of his death.
Allison, a Muscular Dystrophy Association camp volunteer for 11 years, was so grief-stricken he doubted he could deal with a new camper. Then he was reminded how important the camps are.
“For one week a year, we become parents to these kids,” Allison said, while bringing campers and counselors to lunch Tuesday in a golf cart that Edgewood Tahoe Golf Course donated.
The youth had just wrapped up a round of boat rides on Lake Tahoe at the Nevada 4H Club Camp across from Kingsbury Grade.
Volunteers from the Henderson Fire Department rigged a hoist to transfer the campers from their wheelchairs to the boats. Firefighters from units in Reno, Las Vegas and North Las Vegas were also on hand to help.
South Lake Tahoe 7-Eleven Owner Lou Magnotti brought his 25-foot Princess out to give the kids a thrill, with the rock band Journey blasting “Only the Young” over the stereo speakers on the boat.
“These kids are having a blast, and that’s what it’s all about,” Reno firefighter Aaron Crownover said on the docked boat.
Other campers enjoyed lounging in inflatable rafts on the lake.
Charles McEvoy, 20, of Las Vegas listed Tuesday’s boat ride and Friday night’s dance as his favorite activities. This year marks the third time he’s been to Lake Tahoe in the 11 years he’s attended MDA camp,
“I like the people here,” he said.
The campers enjoy a whirlwind of activities – from live music and wheelchair races to presentations from the El Dorado County sheriff’s mounted posse and K9 units.
On Tuesday, Polly Scarsfield brought her specially trained dogs – also used at Washoe Medical Center as pet therapy canines – to the grounds to greet the campers. The golden retriever named Finnegan and a leonberger named Tierney didn’t hesitate to give the campers a few kisses.
“You look in the eyes of (a dog) that’s going to immediately love you, and you light up,” MDA camp co-Director Cheri Downs said. “The kids love the animals – the touch, the smell, the interaction. There are no words needed and no feelings need explaining. Animals don’t judge and bring them such joy.”
Every year, one or two graduates move on. Many others don’t, but hope is on the way.
“We now know what causes the disorders. Fifteen years ago, we were clueless,” said Ron Schenkenberger, MDA director of research administration. Scientists have predicted the development of therapies within the decade, he added, with help from controversial stem cell research.
“It’s an extremely promising therapy technique for replacing defective cells in the muscles,” Schenkenberger said.
MDA currently uses adult stem cells in its research, since the controversy surrounds embryonic cells.
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