Yorkton firefighters are training for the Queen City Marathon this fall in support of a local boy living with a rare genetic condition. Yorkton Fire Protective Services has set a goal of raising $10,000 for Lennox “Lenny” Leibel and his family, while also helping to raise awareness about hypohidrotic ectodermal dysplasia (HED), a condition that affects skin, hair, teeth and sweat gland development. “He’s a crazy little dude, as most little boys are,” said Lenny’s father, Justin Leibel. “He doesn’t skip a beat. He’s my little shadow. He likes working on cars with me, washing cars, stuff like that.” Lenny is the youngest of three siblings. His mother, Brittney Leibel, said he was diagnosed early compared to his peers. “He was diagnosed the day he was born, which was actually pretty wild because usually they don’t get a diagnosis until they start having some issues,” she said. According to the U.S.-based National Foundation for Ectodermal Dysplasias (NFED), HED is often not identified until children begin teething, around six months of age. Other signs can include dark circles around the eyes, peeling skin and an intolerance to heat. For Lenny, the condition means challenges with hair and tooth development, as well as difficulty regulating body temperature because he is unable to sweat. Brittney said finding information and specialized care has not always been easy. “We did have to do a lot of our own research, and we actually kind of teach a lot of doctors about the condition,” she said. “There isn’t really anyone that specializes in his condition around here.” Last year, the family travelled to Minneapolis to attend a conference and learn more about the condition. They also shared information about HED on social media during Ectodermal Dysplasia Awareness Month in February. It was through one of those posts that Yorkton firefighters learned about Lenny’s story. “They just happened to come across it, and they reached out to us, and that’s how it started,” Justin said. The connection came at a time when Justin was considering creating a foundation to raise awareness about the condition. “I was really wanting to start our own foundation here to spread awareness because it’s very hard to tell everybody every five minutes what to watch for and the signs,” he said. Firefighters began fundraising earlier this summer, reaching out to local businesses for support. “All the funds will go toward the family for whatever they need to use it for, whether it’s travel expenses or dental care,” firefighter Cody Doll said. In addition to fundraising, firefighters will take on the challenge of running the Queen City Marathon in Regina during the second weekend of September. “The marathon is a challenge for us,” Doll said. “If Lenny can go through what he’s going through, and how old he is as well, we can go through a struggle ourselves running a marathon, even though we’re not pristine runners.” This marks the third year the Yorkton Professional Firefighters Association has used the marathon as a fundraising initiative. Doll said previous campaigns have typically exceeded their original goals. While financial support is appreciated, the Leibel family says education and awareness remain their top priorities. According to the NFED, HED affects approximately 2.99 people per 100,000. The organization notes that individuals with the condition generally have normal overall health and development. “He’s still a normal little boy, with a few little challenges,” Justin said. Like other children his age, Lenny attends daycare. His mother said they have worked closely with staff to ensure his needs are met. “They do a really good job,” Brittney said. “We have to obviously educate them based on his condition, how to feed him and keep him cool, especially on the hot days in the summer. Everyone is really good with him.” Donations can be made at the Yorkton Fire Hall ahead of the Queen City Marathon. Firefighters hope the effort will not only help the Leibel family, but will also educate the public on a condition — which may not be well-known but is certainly present. More details on how to donate can be found here.
