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Blaine and Sarah Penny with their children Julia and Evan. The couple founded MitoCanada after Evan was diagnosed with mitochondrial disease, which has left him a quadriplegic and unable to talk. (Rachel Penny)
Blaine and Sarah Penny with their children Julia and Evan. The couple founded MitoCanada after Evan was diagnosed with mitochondrial disease, which has left him a quadriplegic and unable to talk. (Rachel Penny)

GIVING BACK

A high-energy effort to tackle an energy-sapping disease Add to ...

The Donors: Blaine and Sarah Penny

The Gift: Creating MitoCanada

The Reason: To fund research and support for people with mitochondrial disease.

One morning about three years ago, Blaine and Sarah Penny’s four-year-old son Evan woke up with a stomach ache. Evan had been a healthy child and the Pennys thought the problem might be his appendix.

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But as Evan’s condition rapidly deteriorated, the couple, and Evan’s doctors, suspected he suffered from something far worse. After months of tests and operations, the Pennys were told Evan had mitochondrial disease, a genetic disorder that causes the mitochondria in body cells to stop producing energy. The illness left Evan a quadriplegic who can’t talk.

“We didn’t realize the extent of what was happening, to be honest,” Mr. Penny said from the family’s home in Calgary. “I had never heard of [the disease] and my wife had never heard of it.”

The couple had to turn to an American organization for information. “We realized there was nothing in Canada. No support group or anything,” Mr. Penny said.

Two years ago they created a Canadian charity called MitoCanada to raise awareness about the disease here at home and raise money for research. So far the organization has raised more than $150,000, mainly through an annual 100-kilometre run from Bragg Creek, Alta., just west of Calgary, to Canmore. This year’s event was held in August and about 30 runners ran at least part of the way and raised more than $30,000.

“It was tough, there’s no doubt about it,” said Mr. Penny, an engineer who is also an ultramarathoner. “It’s one of those events [where]you feed off the energy of others.”

Evan is now 7 and his condition has stabilized. But the couple is worried about their five-year-old daughter Julia. She is healthy but there is a one in four chance she has the same genetic defect and the disease could surface at any time.

For now, all Mr. Penny can do is plan next year’s run and work with volunteers across the country on other fundraising events. “There’s only so much we can do for Evan. The hard part is you never feel like you are doing enough,” he said. “One of the things with MitoCanada, at least it feels like I am investing some time and effort into something that could one day help him and others like him.”



pwaldie@globeandmail.com

Follow on Twitter: @PwaldieGLOBE

 

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