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Local runner’s victory inspired by quadriplegic son

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Blaine Penny with his quadraplegic sonBlaine Penny knew he’d be caught eventually, and it happened at the 65-kilometre mark of his race. The chase car pulled up beside him as he chugged along by himself on the road just outside Niagara Falls.

At that distance, the 40-year-old Calgarian had run a marathon-and-a-half. He was the last man standing so-to-speak and won the Canadian race at the Wings for Life World Run, which raised more than $4.2 million for spinal cord research on May 3.

The chase car — dubbed the ‘catcher car’ — began following runners 30 minutes after the race began, adding speed at intermittent points. When it caught you, your race was over.

“It’s kind of coming up on you pretty fast so you can see it,” Penny said.

“Because I was in the lead, the guys riding the motorcycle on the film crew are feeding me info on when the ‘catcher car’ was coming: ‘It’s 200 metres away, it’s 100 metres’ that kind of thing.”

Niagara Falls was the lone Canadian location for the race, which attracted 101,200 runners from more than 30 countries all racing simultaneously. Penny impressively placed 27th overall in the male category.

More importantly, he raised money for spinal cord research, which he has fervently been doing for the past five years. His son Evan, who is 11, is a quadriplegic who suffers from a mitochondrial disease that struck him when he was four.

“I’m reminded daily of his inability to move and be active,” Penny said.

“For me, that’s my inspiration. I get out there and I think about him all the time. I feel like I owe it to myself and I owe it to him to use my energy as best I can.”

Evan was born with a genetic mutation that can result in mitochondrial disease at any time in one’s life. It can lie dormant and can manifest itself because of stress on the body. In Evan’s case, he woke up one morning with a sore stomach and, thinking it was appendicitis, Blaine and Evan’s mother Sarah took him to the hospital. Doctors did an ultrasound and when they couldn’t see his appendix thought it was either hiding or ruptured, and took him into surgery.

“He never woke up from surgery and went into a coma,” Penny said. “When he woke up from the coma he had suffered a severe brain injury and has been a quadriplegic ever since. He hasn’t spoken a word since, and he’s tube fed.”

It took a year to have the disease diagnosed because it was so complex, Penny said. When it was, Penny attended a conference of the United Mitocondrial Disease Foundation in the United States in 2010, where he met with other families. It was there that the Pennys and other Canadian families decided to start a foundation — MitoCanada — and Penny has been the organization’s chair ever since.

“We started out with some running events and we’d added some other things since then and we’ve raised over a million-and-a-half dollars since then and we’re supporting fantastic research. We’re supporting PhD students who are going into the field of research. We’re doing amazing things,” Penny said.

The Calgary running community can help MitoCanada ( raise more. For the past two years the foundation has entered a team in the charity challenge at the Scotiabank Calgary Marathon, raising $100,000 on each of those occasions. They are going to participate again May 31 and are looking for other runners to join their team.

“Even if people have already registered for the race, they can sign up for the charity challenge,” Penny said. “It’s not too late.”

The Pennys are doubly eager to see progress made in finding a cure because their nine-year-old daughter Julia has a 25-per-cent chance of having the condition.

“We’re still doing genetic testing for Evan and if we could identify the gene, we could test Julia to see if she has it,” he said.

“But, again, there’s minimal treatment and no cure. It’s one of those things — do you really want to know? You just live life and make the most of it and hope it never happens.”

Jeff MacKinnon, For the Calgary Herald

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