Calves to Cure Duchenne held at BLS

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It’s every parents’ worst nightmare – getting the news that their child has been diagnosed with a terminal illness.

Paul and Laura Heaton of Worden, Mont., found out their son, Grant, now 6, has Duchenne muscular dystrophy when he was three. Since then, they have handled the situation with grit, grace and dedication to helping find a cure for the disease. The condition, which only affects boys at a rate of one in 5,000, causes muscle atrophy. Affected children normally lose their ability to walk, feed themselves and breathe independently. Currently there is no cure, but there’s hope through new pharmacological and gene-based therapies.

And hope is a powerful thing.

It’s what the Heatons are capitalizing on as they completed their second annual Calves to Cure DMD fundraiser on Sept. 17 at Billings Livestock Commission. “It really went good the first year, but this year went even better,” says Paul Heaton. With donations still coming in, over $20,000 was raised this year from the sale or partial sale of animals. All money raised went to Cure Duchenne – a research-driven, venture philanthropy based in California.

“There are a lot of runs and walks in our area for various causes, so we wanted to do something different,” says Heaton. “My background is in agriculture and cattle, so this seemed a natural fit, to involved livestock.” Paul runs his own fencing company and Laura works as a civil engineer in Billings. They also have a daughter, Elyse, 8.

Ty Thompson is the sale manager at BLS. He said when Heaton came to him with the idea of the sale, he said it was apparent it was a good cause. “It was the least we could do, to offer our time and services to help.”

All animals that were designated for Calves to Cure DMD sold at 1 p.m. “We had everything from a bum calf to a 2,000 pound bull,” says Thompson. Some people donated the entire proceed from their donation, some giving as many as three or four animals, others designated a partial amount of their sale. “Our buyers definitely pitched in and the cattle all brought market or a bit above the market,” Thompson says. “We’ll continue to hold it around the same time each year for as long as the Heatons want to do this, and we hope it just continues to grow.”

Kim Keltner and his wife, Jan, ranch north of Terry, Mont. They have known the Heatons for years through Paul’s business. “He’s been building fence for us for over 10 years – I’ve watched as he got married and had kids and now we get to watch the kids grow up,” says Keltner. “They’re absolutely the nicest people; they’ve become kind of like family to us.” When Keltner heard about the Calves to Cure DMD auction he said they were immediately on board. They donated last year and sent several animals again this year. “That little boy is just one of the cutest kids you’ve seen. When they got his diagnosis, it turned their world upside down. Helping them out is a very worthy cause,” he said.

In addition to the animals auctioned, a beef was donated by Sian Land and Livestock of Pompey’s Pillar, Mont., with processing donated by Cowboy Meat Company in Forsyth, Mont. Everyone who donated an animal or a portion of proceeds had their name entered in a drawing for a Ruger 6.5 Creedmore rifle, donated by Jordan Harmon of Twin Bridges, Mont. The winner was Upper Keyser Creek Ranch from Columbus, Mont.

For the Heatons, life as they know it three years ago will never return. They now live in a new normal. Grant does physical therapy twice a month and rigorous stretching at home to keep his muscles from tightening. Part of his therapy is strategic use of regular childhood activities, like swimming and horseback riding.

“He a normal 6-year-old boy,” says Heaton. “It’s just that his muscles don’t work like ours.”

Every child who has Duchenne is affected differently, depending on which mutation they have. “Our goal is to keep him out of a wheelchair as long as possible,” says Heaton. “We try to stay positive as much as possible. It’s tough, but hey, he’s still got a life to live. He started kindergarten this year, so we have all that stuff to do. We just try to appreciate every day and want him to live as normal of a life as possible for as long as he can.”

With Duchenne, the normal process of muscle growth from cells breaking down and then rebuilding to become stronger doesn’t happen. Instead, the cells break down but don’t rebuild, causing scar tissue. Grant takes steroids to combat the inflammation, and goes to a doctor every six months. The Heatons have proactively made some alterations to their home, including a ramp and bathroom revisions, in preparation for the inevitable changes that will happen to Grant. Most boys with Duchenne become wheelchair bound by 12, and their life expectancy is only their 20s.

“We’re three years into it now, and it’s all right and we know all we can about it, but every now and then it will just kick you in the guts. You never really get used to it,” says Heaton.

As the Heatons live day to day, they also look to the promise of research, their only hope for Grant in combating the disease.

Cure Duchenne was started by a couple whose son has Duchenne. Their founders, Debra and Paul Miller, have backgrounds as corporate officers in publishing, stock trading and the food industry, and the organization states it breaks the traditional charitable mold by balancing passion with business acumen. The foundation has a venture branch which finds, funds and fosters early-stage science for treatments and cures for Duchenne using philanthropic dollars. “Our venture philanthropy model funds ground breaking research, early diagnosis and treatment access,” states their website. “With pioneering education and support programs, our organization drives real change for those with Duchenne muscular dystrophy and their loved ones.”

Heaton says they attended a conference last year and met with some of the researchers. “One of the scientists told me, “We ARE going to cure this. It might not be in time for your son, but we’re so close, don’t give up.”

Heaton says although they don’t know what the future holds, they hope their experience can help other families dealing with Duchenne. “If anyone knows someone facing this, we encourage them to reach out to us.”

And livestock owners can plan ahead for next September, when Calves to Cure DMD will again be held at BLS.

The auctioneer will “run ’em in boys,” so that the future will be one where all little boys can run.