Three local dads hike to Clingmans Dome for boys with Duchenne disease

Todd Crawford, Jimmy Dotson and Nick Ware, from left, speak about their upcoming 10-mile hike to Clingman's Dome in the Smoky Mountain National Park in an attempt to raise money and awareness for Duchenne, a neuromuscular disease which affects each of their sons.

Todd Crawford, Jimmy Dotson and Nick Ware will hike 13 miles to the top of Clingmans Dome in the Great Smoky Mountains National Park this weekend.

If the Chattanooga fathers could hike a thousand times the distance to find a cure for the neuromuscular disease that plagues their sons, they'd do it.

McKenzie Crawford, 12, Luke Dotson, 7, and Alex Ware, 16, have Duchenne, a rare and devastating muscle disease that affects one in 3,500 boys.

Their fathers' climb is part of the annual Climb to CureDuchenne: Pick Your Peak event in which people across the country hike up a mountain, hill or tall building to increase awareness and raise funds to find a cure for the rare form of muscular dystrophy.

"It's a personal time," said Nick Ware, 37, "[for] all three of us to do something in collaboration for our sons. It's a bonding experience for us."

While the experience will no doubt further bond the trio, they already work with each other. Crawford and Dotson have been employed together in voice and data communications for Unum for more than nine years. Ware works for Lawson Electric but is an imbedded contractor for Unum.

The group is trying to raise $10,000 for CureDuchenne, a nonprofit organization -- and the national event organizer -- that raises awareness and funds research to cure the disease.

Crawford created the Climb to CureDuchenne team called CALM Dads, which is an acronym that represents the first names of Caleb Nance, Alex, Luke and McKenzie.

Caleb, 6, who also has Duchenne, is the son of Brad Nance, who was introduced to Crawford by a mutual friend. Nance, coincidentally, works in a similar field to the other men, information technology, with Northwest Georgia Bank.

According to CureDuchenne, 24,000 boys in the United States are living with Duchenne. The odds of four boys in the Chattanooga area whose fathers work in the same field having the disease is statistically remarkable.

GETTING THE WORD

Ware said Alex was diagnosed with Duchenne shortly after his first birthday. High enzyme counts in a blood test led his parents to a liver specialist and, in turn, to a Muscular Dystrophy Association clinic.

Many boys with Duchenne are in a wheelchair by age 12 and have their spine fused by age 15.

Alex, who has been taking steroids since he was 5, only recently began to see more of a decline, Ware said. He is using his wheelchair more, falling more frequently and, in general, has to have things done for him that he used to do by himself.

When his son was diagnosed, he said, "I thought medicine was so far advanced, there [would] be a cure" by the time he reached his current age. "Within 10 years time, I thought there'd be a cure. A lot of good stuff has come out, but nothing has been a cure."

Crawford said McKenzie wasn't diagnosed until he was age 4 and immediately was put on steroids to preserve what muscle function he had.

"We always thought he was being lazy," he said. "He'd walk real slow. He looked like a fat man running, even though he wasn't fat. [The diagnosis] put everything into context -- why he was lagging behind."

Today, McKenzie is still walking, Crawford said, and is able to go outside and play games but not on the same level as his friends. He's also participating in a clinical trial of a drug licensed by Glaxo Smith Kline that has some promise to further slow down the disease's progression.

"Sometimes, he gets bummed out," Crawford said, "but, like every boy I've encountered with Duchenne, he has a very positive outlook."

Dotson said Luke was diagnosed about three years ago after he began to complain about pain in his legs. His primary-care physician had him do some physical maneuvers, took some blood and immediately sent him to Children's Hospital at Erlanger for more tests.

"It was a little bit of a slow journey there," he said.

THE CLIMB

Clingmans Dome, at 6,643 feet, is the highest point in the Smoky Mountains, the highest point in Tennessee and the third-highest mountain east of the Mississippi River.

The CALM Dads, minus Nance, are among 12 teams hiking to the top for CureDuchenne the last two weekends in June.

The signature hike for the organization this year is Mount Kilimanjaro, at 19,341 feet the highest peak in Africa.

The local dads' itinerary calls for them to hike 11 miles on Saturday, stay in the overnight Spring Creek shelter, then ascend the final two miles to the top on Sunday. They'll drive back down.

Crawford, 41, said he climbed Mount Le Conte, another Great Smoky Mountains peak, with a Christian businessmen's group.

However, he joked, "I fully expect to die. I expect for them to have to carry me."

Dotson, 37, said he's a road and mountain-bike cyclist but admitted to being a bit "slacked out."

"I'm a little apprehensive about climbing in general, especially doing 10 or 12 hours," he said.

Ware, who rides a mountain bike and trail hikes, said he plans to keep his fellow climbers motivated as they go but believes they'll do well.

"It's going to be a challenge, especially for those guys," he said. "It'll be a stretch for me as well, especially at that elevation."

Crawford said their sons are excited about their fathers' trek. The dads are looking forward to it, too.

"We get together for lunch occasionally," he said, "but this is a very good opportunity to spend the whole day together. We'll probably talk about stuff we wouldn't normally talk about."

Ware said the experience will be great for the threesome but even greater with the knowledge it may be the first of many climbs they make to advance a cure for Duchenne.

"I'm at that point of my life," he said, "where I have to try to save my son."