When Blaine Penny’s friend nominated him for a Calgary magazine Top 40 under 40 honour, Penny thought of himself as just the little guy from Gambo.
“He’s a real rock star,” Penny said of his friend, who had won the award previously and has a doctorate and an MBA from Harvard and now lives in Australia.
But when Penny, 36, tells his family’s story, it’s easy to understand why he’s capturing so much attention.
When Penny’s toddler son Evan slipped into a coma in 2008 after doctors believed he needed an appendectomy, life changed drastically for Penny and his wife, Sarah, while their son fought for his life.
Much later, Penny learned his son has a condition called mitochondrial disease.
This fall, Calgary’s Avenue, a city lifestyle magazine, included Penny in its Top 40 under 40 because, faced with his son’s debilitating disease, the civil engineer led the creation of MitoCanada, which aims to find a cure.
The magazine also honoured another native Newfoundlander, Kim O’Brien, originally from Ferryland. The 35-year-old is executive director of the non-profit Horizon Housing Society, which has provided more than 600 Calgarians with affordable housing.
O’Brien previously managed a publicly traded property management company’s $1-billion-plus mortgage portfolio.
She worked with the organization for nine years in Calgary and Toronto and after leaving, O’Brien said she wanted to try something different because community has always been important to her.
O’Brien said the honorees were announced out alphabetically at the Avenue gala, and that she and Penny were standing next to each other when they discovered they had their home province in common.
“It was a real honour somebody took the time to nominate me for this. And when you look at all the people on the list, there are phenomenal people doing amazing work,” O’Brien said.
Penny and O’Brien were chosen from among more than 250 nominations.
Not just the flu
Not long before Evan Penny turned four, he became lethargic. His parents thought it was just cold and flu season, but one morning he woke up screaming and crying with sharp abdominal pain, his father said.
The surgery revealed that there was nothing wrong with his appendix, but the coma lasted a week.
“It was brutal, probably the worst thing you can go through as a parent, next to losing a child,” Penny said.
When Evan finally opened his eyes, he had suffered severe brain damage and is a quadraplegic.
He was first diagnosed with acute disseminated encephalomyelitis, a severe neurological attack.
But Evan didn’t get better and began to suffer more than 100 seizures a day.
“He was clinging to life for a long time,” Penny said.
The family eventually learned he had mitochondrial disease, caused by a mutated gene that was previously dormant.
Their daughter Julia has a one in four chance of developing the disease and Penny and his wife could both be silent carriers.
A couple of months after the diagnosis, Penny attended a symposium in Washington, D.C. and worked with others to form MitoCanada, a support and awareness group.
“For a year we were living day to day because Evan was so fragile,” said Penny, an elite marathon runner who has developed a ultramarathon event in Alberta to promote the non-profit charity.
“We didn’t know if he was going to live to see tomorrow.”
According to MitoCanada, the disease is a group of disorders that occurs when the genetic material mitochondria fails, and less and less energy is made in the cells. The cells may stop working or die. Depending on where the affected cells are, parts of the body may not function properly and many health problems can result. The symptoms of mitochondrial disease can range from mild to severe.
The disease has altered the Pennys’ lives. Photos of Evan before he was stricken show a healthy child hiking, swimming, learning to ski.
The family moved to a different house to accomodate features more suited to Evan’s mobility issues.
He goes to a school that combines physical therapy, motor skills and other special needs with education.
For his father, exercising and promoting awareness of the disease is a way of coping.
“Other than Evan’s day-to-day life, we can’t help him. There is no cure and the medical treatment is minimal,” Penny said.
The only medicine is a cocktail of vitamins, therapy and exercise.
One in 4,000 people are struck with the disease and fewer than 10 per cent of the cases are diagnosed, he said.
Sarah has cut back her hours of work to be Evan’s primary caregiver. She is an environmental engineer at the same firm where Penny is manager of projects, WorleyParsons.
“We’re both practical people. We did a lot of problem solving to make the household work — all the little things Evan would need to make his life more enjoyable,” Penny said. “One of the things we made a conscious decision of is not to be bitter.”
Even though the family is unsure of what the future holds, there are signs of hope. Evan’s seizures are dramatically reduced.
And though Evan can’t talk, Penny says his son’s eyes show he is fully aware.
And after a year of not being able to smile because of muscle debilitation, one day at school he started laughing during a class game.
Evan also plays in little league now.
“To sit in the stands and watch him is pretty cool,” Penny said.
He acknowledges that a miracle may be needed for Evan to fully recover, but adds there have been advancements in science and medicine.
And that’s what makes the contribution of MitoCanada important.
“I do think in this lifetime there will be treatment that could help a guy like Evan,” Penny said.