WORDEN, Mont. — Grant Heaton wears cowboy boots with shorts as he roams his backyard and the pasture bordering it.
The 6-year-old walks a big circle through the tall grass, then sits beside big sister Elyse. Later, the pair will spin on their swings and kick their big blue ball for their dog Junior. Normal country kids, doing normal country kid things.
“He walked kind of like John Wayne,” Paul says. “And we thought it was his hips, so we went to get it checked out.”
They took Grant to a free Shriner’s clinic in nearby Billings, in south-central Montana. The doctors at the clinic referred the Heatons to specialists in Spokane.
There, the family received devastating news — Grant has Duchenne muscular dystrophy, a rare genetic disorder that causes progressive muscle degeneration and weakness.
“There’s no cure for Duchenne,” Paul explains. “Boys with it don’t make it out of their 20s.”
“It was horrible. You don’t expect it or want it,” Paul says. “And what do you do?”
That “what do you do” part hasn’t gotten any easier. But as they learned of promising research for Duchenne, the Heatons wanted to help. While that’s not unusual, their manner of fundraising is.
“There’s a lot of different ways we could go, with races and walks,” Paul pauses, then laughs. “I’m not much of a runner.”
So instead of a walk or a run or a telethon, the Heatons have leaned on the agriculture community.
“Laura and I were talking and thought, 'hey why don’t we do a calf sale?'” Paul says.
A need for a cure
“Duchenne is a pretty rare disease. There’s roughly 30,000 boys in the U.S. that have it, which when you get to doing the math on it, is pretty rare. And there’s nothing you can do for it. And it’s a pretty hopeless feeling knowing that from a parent’s perspective,” Paul says. “His muscles don’t work like ours do. You break muscle down and build it up stronger; his breaks down and turns into scar tissue. And you get to thinking about muscles — there’s so many of them. It includes your tongue, your heart, your lungs. And usually it’s the heart and lungs that usually give out when they’re in their 20s.”
The Heatons made connections with other families who have received DMD diagnoses. It helped them to talk to people who had dealt with the same emotions and realities. And they learned about CureDuchenne, a non-profit organization aimed at funding research for treatments and cures, as well as supporting affected families.
CureDuchenne CEO Debra Miller explains the organization goes in early to fund promising research ideas before they’re far enough along to gain the interest of pharmaceutical or biotech companies. Two recent projects funded by CureDuchenne are especially exciting. A gene editing therapy from Bamboo Therapeutics, which was purchased by Pfizer, will soon enter phase three trials. Miller says it could be a “one and done” injection treatment to stop DMD in its tracks for young boys, though work would need to be done to make it work for older DMD patients, like her 23-year-old son. In another project, CureDuchenne helped co-found Exonics Therapeutics, since purchased by Vertex Pharmaceuticals, and researchers there believe they will soon have the first CRISPR therapy, a way of altering genomes and DNA, for DMD enter clinical trials.
“We know we will cure this disease, and it’s just a matter of when,” Miller says. "Obviously, it’s a race against the clock. And the only thing standing in our way right now is funding.”
‘We don’t want your good ones’
While the sale idea was in its infancy, the Heatons met Ty Thompson, cattle sale manager at Billings Livestock Commission. Thompson helped him plan a special sale within the barn’s normal all-class cattle sale.
"Paul and his wife have spent a lot of time trying to promote this sale and trying to bring awareness to this disease, and I think it's a good way for ranchers to help out," Thompson said.
Paul knew it was a tall order asking people to donate cattle.
“Animals are kind of your paycheck for the year, so it’s kind of a big ask,” he says. “So we thought, we don’t want your good ones, anything that’s going to go on a semi … at shipping time. Just as long as we get A.1. (Sauce), we don’t care what it looks like. If it’s got one eye, we’ll take it and sell it, and the money is going to go to research for a really good cause.”
They got 13 head of cattle donated for their first sale in 2019, and they raised more than $17,000 for CureDuchenne, both in the sales of animals and in other donations.
Ranchers can choose to donate any amount, from their entire check on down. This year’s Calves to Cure DMD sale will take place on Sept. 17 at 1 p.m., during Billings Livestock Commission’s normal all-class sale. Thompson says most of the calves will be purchased by the regular buyers for regular market prices.
For now, Grant gets to live a pretty normal life. He is excited about starting kindergarten at Huntley Project Schools. Grant says he’s looking forward to “trying out new things and trying new foods.” He likes to make things, like airplanes, and he likes his family’s cows, “especially the babies.” He and his sister giggle as they explain how they trained their orange tabby to “zoom” around.
His parents include him in everything they can, adapting when necessary. Laura says Grant goes to physical therapy every other week, and they do stretches every night. He takes steroids, and he wears braces on his ankles to bed. Horseback riding seems to be a good therapy for him, as does swimming.
“He knows what he has. He doesn’t know the end stuff, you know, which he shouldn’t,” Paul says. “That’s nothing he should have to worry about. We’ll burn that bridge when we get to it.”
The big hope remains that a cure or at least a treatment will be found to help Grant live a normal, much longer life.
“Ideally, hopefully with this calf sale we can raise some money, get the research out there and find a cure for this terrible disease,” Laura says.
But they know it might not happen in time.
“You don’t count on that,” Paul says.
He looks at it as if research is the blast out of a shotgun; the more shots that go out, the more likely something will hit the target. And if that big breakthrough doesn’t come in time to help Grant, it still will help the next little boy who gets the dreaded diagnosis.
“Hopefully something sticks, and if we can help one shot out of a shotgun shell to make it work, then we’ll do it,” Paul says.
For more information
Paul Heaton says anyone who wants to donate cattle to the Calves to Cure DMD sale should contact him at 406-660-1208. He has volunteers willing to help haul to Billings for the sale from various points in Montana. More information is available at https://www.facebook.com/calvestocureDMD. Ty Thompson with Billings Livestock Commission says cattle for the Calves to Cure DMD sale can be hauled in to the barn any time the week of the sale.
The Heatons also welcome families who are dealing with DMD diagnoses to contact them.
To learn more about CureDuchenne or to donate directly to the organization, visit https://www.cureduchenne.org.