“Sometimes, you just have to put one foot in front of the other and keep going. You might go slowly, but it all adds up. You just take it one step at a time.”

It’s hard to know where to start in describing why Blaine Penny is such a remarkable person.

He’s an exceptional athlete, with the 2010 Canadian Ultramarathon Championship under his belt. He’s CEO of Integrated Sustainability, an innovative engineering company committed to developing sustainable environmental solutions. He’s President and CEO of MitoCanada Foundation, the charitable organization he co-founded to raise support and awareness for mitochondrial disease, from which his eight-year-old son Evan suffers.

But the reason he excels in every aspect of his life, no matter what’s thrown his way, is what makes him most extraordinary: his ability to maintain perspective and appreciate his blessings. Because, as he says, things could always be worse.

Once you know Blaine’s story, I think you’ll agree that it’s amazing he’s still able to see that things could be worse. But he doesn’t just talk the talk. He runs the run. He truly lives his life with a laser-sharp focus on the positive, and a steady drive to make the very best of what he has.

Blaine was recommended to me by Kickass Canadian Julie Drury, whose four-year-old daughter Kate has also been diagnosed with mitochondrial disease—a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for all the cells in our bodies. “There are many words to describe Blaine Penny,” says Julie. “I think the best ones are ‘inspirational and incredible.’ When you meet Blaine, you see that he exudes energy and drive. You can’t help but get caught up in both. Blaine is what being a Kickass Canadian is all about.”

A wrinkle in time

When I called Blaine up in Calgary, Alberta, where he lives with his wife of 10 years, Sarah Penny, their son Evan and their six-year-old daughter Julia, I thought we’d talk mostly about his racing adventures, his son’s condition and MitoCanada. But right off the bat, Blaine threw me a curveball.

“I have nine sisters,” he says with a laugh. “It’s like an Oprah Winfrey story.”

Blaine and his elder brother were adopted by a couple in Gambo, Newfoundland, who then proceeded to have four biological daughters. Over the years, as Blaine grew curious about his own biological family, he discovered he was the youngest of six children, and the only boy in the pack.

So far, he has connected with four of his five biological sisters, and even met his biological mother, who’s now 82. But he has no mixed feelings about where he came from. “I always knew I was adopted, and for me, it never felt different. My parents were amazing parents and they gave me lots of opportunity in life.”

A great sport

Many of those opportunities revolved around physical activity, which Blaine describes as “a way of life” within his family. “We’d ski across bogs and over power lines and across numerous ponds, and we’d go ice fishing for the day,” he says. He was involved in nearly every sport, from track and field to volleyball to badminton, and, “like every other kid, I wanted to play in the NHL.”

But cross-country skiing was the first sport to truly steal his heart. He got hooked on it when he was about eight years old, and went on to make the Newfoundland ski team. When he graduated from Smallwood Academy in 1992, he attended Lakehead University in Thunder Bay, Ontario “because it was probably the best place in the country to compete at a high level for skiing while studying.” He skied and studied engineering during the colder months, and spent his summers planting trees.

One year, on the way to a gig in British Columbia, he drove through Canmore, Alberta, and fell in love with the mountains. “I just thought, ‘Wow, this place is amazing,’” he says. “I knew I wanted to go back.” So, after university, he moved out west, found work as an engineering consultant, and immersed himself in an active mountain lifestyle that revolved around skiing, but also included mountaineering, climbing and adventure racing.

These days, Blaine is still competitive in cross-country skiing, finishing on the podium in most races, and placing fourth in the 2011 Masters World Cup. But from the moment Evan was born, he knew he wanted to spend as much time with his family as possible. So he shifted his focus to what he considers the most efficient sport of all: running.

Participating in the 2011 MitoCanada 100km Running on Empty charity run

Staying the course

Blaine ran his first ultramarathon in 2007. He’d always loved endurance sports and had completed several adventure races, but he’d never run a marathon. True to form, he dove right in off the deep end and tried his hand at the Blackfoot Ultra, a 100km course near Edmonton, Alberta.

“I’m intrigued by how far you can push your body and how it responds,” he says. “Every time you push yourself into an unknown space and challenge yourself, you always learn something new about yourself.”

Among other things, he learned that he’s very good at running ultramarathons. Not only did he win his age group, he set a new course record for his age group. “You never know until you try something,” he says. “You realize how powerful the mind is, and I sort of have this belief that if you believe something and you will your body to do it, you can do it. It might just hurt a lot.”

Evidently, pain doesn’t scare Blaine. Since 2007, he’s run at least one ultramarathon a year—scattered around various full and half-marathons—and continues to perform extraordinary feats of endurance. Sponsored by Salomon, he holds the Iron Legs 50 Miler course record, and won the event the last two years in a row. He finished second overall in the 2010 and 2011 Powderface42, and completed last year’s Chicago Marathon and Ottawa Marathon in an impressive time of 2:34.

After the 2011 Ottawa Marathon

Canadian 50 Mile Ultramarathon Champion

When Blaine won his first Iron Legs title in 2010, the event doubled as the Canadian 50-Mile Ultramarathon Championship, making him a national champion. It’s a title he arrived at the hard way.

The day before the race, the course had been used for a mountain biking event, and many of the running course markers were removed. Iron Legs organizers rushed to get them back in place, but Blaine was so far ahead of the other runners that he caught up with the organizers when they were still 10km shy of the finish line. He was accidentally sent in the wrong direction, so when he finally arrived at the end—still in first place despite having run more than the course’s official 80km—he was disqualified.

Until, that is, the race director realized that event officials were responsible for leading him astray. He was driven back to the point where he’d gone off course and allowed to re-run the last 10km for his official race time. After a quick break “to toss my cookies in the ditch” (Blaine typically runs himself sick during ultramarathons), he arrived at his destination, finished the race and won by more than one hour.

“I distinctly remember how awful and how painful it was,” he says. “But that was the first year we were doing our big fundraising run (for MitoCanada), called Running on Empty… and I thought, ‘You know, this is a really good parallel for that run and for this disease my son has. I can suffer through this if they can suffer through what they go through.’ So it was good inspiration.”

Onsite for the 2011 MitoCanada 100km Running on Empty charity run

Twists in the road

Running on Empty is an annual 100km charity run in Alberta that Blaine initiated in 2010 to raise money and awareness for MitoCanada. You can see footage of the inaugural run in the documentary Running on Empty, made by award-winning Calgary filmmaker Neil Webb.

Of all the ultramarathons he’s run, Running on Empty is, and likely always will be, the most special to him. When he started running ultramarathons in 2007, his son Evan was a healthy three-year-old boy. But every ultra Blaine has run since then has taken place after the life changing events that began in March 2008.

Young Evan woke up one morning with intense stomach pain. His complaints were so severe that Blaine and Sarah took him to the Alberta Children’s Hospital (ACH). After an ultrasound, the doctors were 80% certain Evan was suffering from appendicitis, so they scheduled emergency surgery.

But Evan seemed to sense that something bigger, something life altering, was about to happen. Just as Evan was being wheeled into the operation, Blaine recalls his son looking him in the eye and asking, “Daddy, can we play together again sometime?” Those are the last words Evan has spoken since 2008.

When Evan didn’t wake up from the surgery, it became clear that was something was very wrong. At first, his medical team thought it was a reaction to the morphine. They soon realized he’d suffered severe brain damage that night.

Evan was initially diagnosed with acute disseminated encephalomyelitis (ADEM), an autoimmune neurological disease that Blaine describes as being similar to a very acute form of multiple sclerosis (MS). “When we looked up what ADEM was, we learned that 90% of kids would pretty much fully recover from it,” says Blaine. “So we were quite optimistic at that point that Evan would get better.”

But for a long time, he only got worse. He spent several months in the hospital “clinging to life,” says Blaine. “We didn’t know what the next hour would bring for Evan. At one point, he suffered hundreds of seizures a day.”

Eventually, Evan was diagnosed with a probable mitochondrial disease—“probable” only because the mutated gene that causes the disease still hasn’t been isolated. The doctors never determined what caused Evan’s stomach pain when he was first admitted to the hospital, given that it turned out not to be appendicitis. To this day, Blaine wonders whether the surgery played a role in the onset of his son’s condition.

“In retrospect, Evan was showing signs of being off throughout the week leading up to his surgery,” says Blaine. “He was lethargic and tired and just didn’t seem himself. He may have been suffering some slight neurological problems… Now that we understand more about mitochondrial disease, we know that it can sit dormant until certain triggers or stressors on the body cause it to manifest. So we think that something was happening leading up to (the surgery). However, I do feel that the anesthetic or the surgery or a combination thereof did certainly exacerbate the situation.”

Blaine may never get an answer to that maddening question. But regardless of the answer, the outcome remains the same. “It’s kind of like your worst nightmare as a parent, aside from your kid getting hit by a Mac truck,” he says. “But it’s a reminder that life’s fragile and things like this happen.”

There it is—a perfect example of Blaine’s exceptional ability to maintain perspective and focus on the good, no matter what the circumstances.

“It would be easy to say, ‘You know what, this just sucks. It sucks for Evan and it sucks for (me and the rest of my family) because we had all these dreams in life, and a lot of them aren’t going to come to fruition,’” he says. “You could spend a lot of your life fretting over that. But the only people who suffer in the end are us.”

So he chooses not to focus on the negative. Instead, he treats the situation with Evan, and everything else in his life, as an ultramarathon. “Sometimes, you just have to put one foot in front of the other and keep going,” he says. “You might go slowly, but it all adds up. You just take it one step at a time.”

Running with Evan during the 2012 Calgary Marathon

Moving forward

Today, Evan is a spastic quadriplegic who can’t talk or eat. He’s fed by a tube, has trouble lifting his head, suffers chronic bouts of pain, and has no reliable way to communicate with the outside world. From what the Pennys and their doctors can tell based on how Evan reacts to those around him, he seems to have cognitive function. It’s just that he’s effectively trapped inside his body.

The family is focusing on using eye gaze as a form of communication with Evan, and Renfrew Educational Services, the school he attends during weekdays, is working on improving efforts to communicate with him. When Evan isn’t at the school, which Blaine calls phenomenal for providing “a place where people like Evan can go and have friends and consistency in his life,” Blaine and Sarah are Evan’s primary caregivers. They have some respite support, on weekends and for a weekly date night, but the bulk of the work falls on Evan’s parents and his younger sister.

About Julia, Blaine can’t say enough glowing words: “She is amazing. When families go through a major life change like this and are faced with the challenges of raising a kid with a disability, it tends to affect everybody, obviously. A younger sibling can get left out; the focus can be all about the high-needs kid. So, we’re very conscious of it, but Julia is so good about it. She loves him to pieces and she’s so proud of her brother… I think she’s the light of Evan’s life. She just lights him up. It’s amazing.”

The Pennys in Cape Spear, N.L., June 2012

MitoCanada Foundation

As much as the Pennys do for Evan, Blaine is keenly aware of the limits to what he can offer his son. That knowledge played a big role in prompting him to found MitoCanada a few years ago.

“When there’s only so much you can do to help your child who’s sick, it’s a really, really helpless feeling,” he says. “It’s so hard as a parent to just say, ‘That’s all I can do.’ So, part of starting MitoCanada was that it was a way to channel any idle energy into something that I felt could maybe one day benefit Evan, as well as others affected by mitochondrial disease.”

Since its inception in 2009, MitoCanada, which is the only organization of its kind to provide “support and awareness to Canadians affected by Mitochondrial Disease while also supporting the advancement of research in the field of Mitochondrial Disease,” has made great strides. It’s raised more than $300,000, largely through grassroots initiatives such as Team MitoCanada, which uses sport as a platform to increase awareness and raise funds.

MitoCanada has allocated a significant portion of the monies raised towards “research projects, as well as hopefully sponsoring a couple of PhD students for three years,” says Blaine. “So we’re actually attracting new talent into the world of research into mitochondrial disease in Canada.” MitoCanada also hired a part-time Executive Director, whom Blaine hopes will help “take the organization to a whole new level.”

A beautiful perspective

This long-term vision isn’t surprising, coming from Blaine—a self-professed “goal-setting junkie” who was formally recognized in 2010 for his impressive contributions to engineering and the community by being named to Avenue Magazine’s Calgary Top 40 Under 40. But what’s astonishing is his ability to combine fierce determination with a very laid-back approach to life.

When I ask Blaine about that paradox, he says it all comes down to perspective: “There’s times in life, or there’s times in your day, where you need to be able to step back and handle things calmly and rationally. But I also really feel that, if you want to do things in life, you have to have goals because they keep you motivated. When you reach those goals, it’s wonderful. When you fail, or things don’t go as planned, it’s important to be able to ask, ‘What can I learn from this and how can I use this experience to improve myself the next time?’ I guess that’s just more my approach. I think the two together—goal-setting and perspective—are very powerful.”

Running with Evan during the 2012 Stampede Road Race half-marathon, Calgary, Alta.

But his approach involves more than goals and perspective. He speaks with a peaceful acceptance of what life has brought him, and I wonder whether that’s something he’s learned from Evan’s ordeal, or something he’s always carried with him.

“I think it’s always been part of me,” he says. “I’ve always tried to be grateful for what I have and not be envious of what I don’t have. Take my situation of being adopted. It’s kind of a crazy story, but I was really fortunate that I got to grow up in a great family that provided me with tremendous opportunities and taught me some great values and gave me a good life. I’m grateful for that. And even for Evan’s situation, you realize that, as rough as it is and as tough as it is, it could be worse. It really could be worse.

“I think that, because of Evan’s situation, my family and I actually enjoy a greater quality of life, if you can believe that, in the sense that we really make the most of everything. We’re reminded daily that we’ve got to keep doing what’s important in life, and that’s looking after our family and looking after our health. When we go to work, we give it our all. And we keep working to grow MitoCanada, because it provides that hope for a future, for a better life for Evan.”

*            *            *

To connect with Blaine, follow him on LinkedIn and @BlainePenny on Twitter, or email [email protected]. For the latest on mitochondrial disease and how you can help, please visit MitoCanada.org.