YORKTON — Three Yorkton firefighters are lacing up for the Queen City Marathon with a goal that goes far beyond the finish line.
Firefighters Cody Doll, James McConnell and Darius Haberstock are using this year’s race to raise money and awareness for Lenny, a Yorkton-area boy who turns four in September and lives with hypohidrotic ectodermal dysplasia, a rare genetic disorder that affects the development of hair, teeth, skin and sweat glands.
The fundraising effort began after one of the firefighters connected with Lenny’s family. After reaching out to his parents, the firefighters launched a community campaign to help offset expenses associated with the condition.
Throughout the summer, the team has been visiting local businesses and seeking donations from residents.
Doll, who’s been with the Yorkton Fire Department for three years, said the group’s motivation stems from Lenny’s resilience.
“We want to show him that if you push yourself, you can get through anything,” he said. “We’re doing something that’s difficult for us, but what he deals with every day is much harder.”
Lenny, who turns four in September, faces a number of health challenges because his sweat glands do not function properly, according to his mother, Brittany Liebel.
The inability to sweat leaves him vulnerable to overheating, particularly during physical activity or hot weather.
“We have to monitor that quite a bit, especially when he’s running around and playing outside in the summer,” Liebel said. “Even a fever can become dangerous because we can’t regulate his temperature very well.”
The condition has also left Lenny without teeth. He currently uses baby dentures, although he is still adjusting to them, and relies largely on soft foods.
In addition, he experiences significant speech delays. Liebel said his mouth is extremely dry because of underdeveloped glands, and his vocal cords can dry out quickly, causing hoarseness and making speech more difficult.
Despite the medical challenges, she describes her son as an energetic child who loves to play.
“Other than that, he’s just a normal wild little boy,” she said.
Lenny attends daycare and is set to begin pre-kindergarten this fall.
His condition was identified shortly after birth by a pediatrician familiar with the disorder’s distinctive characteristics. Further investigation revealed that Liebel carries the gene associated with the condition, which is linked to the X chromosome and tends to affect boys more severely than girls.
Because the disorder is rare, families often have limited opportunities to connect with others facing similar circumstances. Liebel said she has built relationships through the National Foundation for Ectodermal Dysplasias and has shared advice with another Saskatchewan family navigating the condition.
“It’s nice to have that little community if you can,” she said.
Meanwhile, training for the marathon has become a major commitment for the firefighters. Doll said preparation includes long-distance runs throughout the summer, with guidance from his brother, an experienced marathon and ultramarathon runner.
While the three firefighters generally train on their own because of scheduling demands, they share a common goal.
“The goal is to finish, but also to do our best,” Doll said.
The marathon will mark Doll’s third Queen City Marathon. Last year, Yorkton firefighters raised nearly $5,000 for a local child battling cancer. This year, the group has already collected about $6,000 and hopes to reach $10,000 before race day.
Community members who wish to donate can find information through Yorkton Fire Fighters Local 1527’s Facebook page or make contributions directly at the Yorkton Fire Department.
Doll said every donation, regardless of size, makes a difference.
“When the community comes together, it’s pretty special,” he said. “We want to make sure people know how much we appreciate their support for Lenny.”
