Watch above: It’s affects thousands of Canadians. It knows no gender or age and can be debilitating. Every year, Edmontonians do what they can to support those with muscular dystrophy, including offering a highly-anticipated weekend getaway. As Eric Szeto reports, it’s part of a national effort by firefighters to improve the lives of those with the disorder.
EDMONTON — Living with a debilitating disorder can be hard for anyone, but it’s particularly hard for children. It’s part of the reason why a couple of local fire departments began a two-day camp for children who live with muscular dystrophy.
“I believe that this camp has given the kids something,” said Captain Paul McGonigan with Edmonton Fire Rescue Services. “They look forward to this every year.”
Muscular dystrophy refers to a group of muscle disorders in which the face, arm, leg, spine, or heart muscles gradually shrink and weaken over time.
Held at Camp He Ho Ha in Parkland County, the weekend retreat – hosted by EFR and Strathcona County Fire – gives kids and their families a place to meet and spend time with others going through similar situations.
“It’s fabulous for her to play and run around… with other kids who have similar disability or disorder,” said Merv Wirth, whose five-year-old daughter Emily has muscular dystrophy.
This is the fourth year the Wirths have attended the camp, which offers a little something for everyone including arts and crafts, a swimming pool, canoeing, fishing and campfires at night. On Saturday night, the kids even dressed up as their favourite superheroes.
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“To see the smile on her face, and she’s not lagging behind she’s right with everyone else, it’s fantastic. As a parent, you can’t put a price on that, it’s just fantastic for her,” said Wirth.
“It absolutely melts my heart,” added Jeremy Dixon, who has two children with neuromuscular disorders.
“We try to live a life that is no different than anybody else’s… Everybody is equal and as a parent that’s all you ask for and that’s all you fight for. So we’re so appreciative to have this type of a weekend because it means so much, to not only us, but more so for our children.”
The camp, which is fully funded for the kids, wouldn’t be possible without the numerous fundraisers hosted by firefighters. From rooftop campouts to the ‘fill the boot’ campaign, firefighters across Canada raise millions of dollars for the neuromuscular disorders each year.
“That’s what it’s all about,” said McGonigan. “To see the smiles on their faces, it makes us want to help more.”
Money raised across the country also goes towards new equipment. Wirth’s daughter Emily was able to get a KidWalk, a walking chair that helps children walk by properly aligning their bodies.
“She uses it all the time,” said Wirth. “It goes with her to school. It protects her from bumps, trips and falls, but still gives her the mobility in the classroom to go get books, go to her desk, go get playdough.”
The chair has also helped the Kindergarten student take steps on her own, which wasn’t possible just four months ago.
“There’s no words for that. To be able to see my daughter walk for the first time without having to hold onto a wall or be supported by a mobility device, there’s no words in the world that can express that.”
The weekend event was also put on by Muscular Dystrophy Canada. There is currently no cure for the disease.
With files from Eric Szeto, Global News.
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