Local family raises awareness of muscular dystrophy

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They say lightning doesn’t strike the same place twice, but for Kelly Hill, it sure felt that way.

The St. Albert resident has four daughters and two of them — Megan, 9, and Kenna, 7 — have been diagnosed with neuromuscular disorders that fall under the umbrella of muscular dystrophy.

“The first time around, we were quite surprised. … The second time, we knew what to look for, and we saw some similarities,” Hill said. “We weren’t surprised when [Kenna] was diagnosed, but we were surprised that we had two kids out of the four.”

September is muscular dystrophy awareness month in Canada, and both Megan and Kenna were on hand at St. Albert city council chambers on Monday to accept a proclamation from the city. Hill said moves like this are very much appreciated.

“People can get an awareness of the disease, all the different facets of the disease and how it affects siblings, parents and other people on a daily basis,” she said. “It also helps us get the funding we sometimes need toward the extra costs that aren’t covered under insurance.”

Terri Tumack, fundraising and community development co-ordinator for Muscular Dystrophy Canada’s Edmonton office, said that there are an estimated 50,000 people in Canada who are affected by muscular dystrophy, but many more who suffer but have not been diagnosed.

“We’d like people to know that this group of people exists, first of all,” she said. “Of the 150 different disorders that we cover, there are no cures and very few effective treatments for any of these disorders. All of them are progressive and most of them are genetic.”

Muscular dystrophy is the name given to a group of neuromuscular disorders where symptoms include progressive weakness and the wasting away of voluntary muscles that control body movement, replaced by fatty and connective tissue.

There are so many different forms of the disease, each caused by a defect in a specific gene that is associated with muscle function. The muscles involved, the speed of symptom progression, the severity of symptoms and the age at which they appear all vary from form to form.

Tumack said that seeing kids so young — like Megan and Kenna — deal with the disease makes her want to work that much harder to help find a cure and make their lives easier.

“Neuromuscular disorders can be diagnosed in anyone at any age, any race. It’s a relentless group of disorders that really doesn’t know any boundaries,” she said. “For the kids, you really want to know kids can have some opportunity at living out their dreams, whatever they are and however they are able to do that.”

In their day-to-day lives, Megan and Kenna face a number of struggles, including trouble walking and fatiguing easily.

“Megan is doing really well; she has learned to walk without any devices, although she falls a lot. There’s a constant watch for safety,” Hill said. “Kenna uses a walker, and she’s sort of up and down with the disease. There are months when she’s in a wheelchair and it takes a lot more work on our part for feeding and everything, and then there are months where she’s just doing great, like right now; she’s in a walker and talking and doing everything you’d like to see her do.”

“It doesn’t always show to people on the outside what their disease is, so people don’t always know the toll it takes inside.”

But, she added, through it all, they have maintained a very positive attitude.

“They’re two very determined kids,” Hill said. “They want to do everything their sisters do, and everything all the other kids do. And they go at it; they do everything to the max and really try hard.”

Muscular dystrophy is the charity of choice for firefighters across North America, with many brigades holding boot drives and other fundraisers each year. In February, St. Albert Fire Services members braved chilly temperatures while camping out on top of Fire Hall No. 2 on Boudreau Road to raise money for the charity.

Tumack said that, without firefighters’ support, they wouldn’t be where they are today.

“They’re the muscle behind our fundraising campaigns, for sure,” she said.

The next major fundraiser for Muscular Dystrophy Canada is the Edmonton-area Walk for Muscular Dystrophy, which is taking place on Saturday, Sept. 10, at Gold Bar Park in south Edmonton.

“We’re always looking for new participants and everybody’s support,” Tumack said.

For more information on muscular dystrophy or the fundraising walk, visit www.muscle.ca.

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