Raising money for research and awareness
Boy with mitochondrial disease inspires racer to organize fundraiser
When Adriana Moryski met Blaine Penny at a six-day race in Colorado in 2009, the Reginan couldn’t have predicted how the ultra-marathon champion from Calgary would inspire her — outside of sports.
The day before meeting Penny, Moryski had read about him and his son, Evan, who had emergency surgery in 2008 for what doctors thought was appendicitis. When the four-year-old woke up, he was a quadriplegic who couldn’t eat or talk.
Surgery revealed Evan didn’t have appendicitis. For the longest time, doctors couldn’t explain what was wrong with the little boy. The following year, he was diagnosed with mitochondrial disease.
Despite his limitations, the family ensures the 12-year-old accompanies them on outings.
“They do everything with him,” Moryski said. “They just took him on a hike through the mountains. They treat him like a normal boy. It’s really inspiring.”
Since meeting Penny seven years ago, Moryski has been racing for MitoCanada. The charity is cofounded by Penny and his wife, Sarah, to raise money for research and awareness for mitochondrial disease.
In her latest show of support for the Penny family, Moryski organized and is the race director of the Power of 8 Mountain Bike Enduro event, which was slated to run this Saturday as part of Global Mitochondrial Disease Awareness Week.
However, the event had to be moved because of this weekend’s heavy rain forecast. It is now scheduled to run Oct. 14-15 at Buffalo Pound Provincial Park.
“This is the only MitoCanada event in Saskatchewan,” Moryski said proudly.
On Oct. 14, the King of the Mountain and the Queen of the Mountain competitions will be held at sundown.
“They start at the bottom of the ski hill, they run to their bikes and then they bike up as fast as they can to the top of the ski hill,” Moryski said.
Sponsored by Hillberg and Berk, the winning male will get a set of cufflinks and the female winner will get an earring and necklace combo.
So far, 68 riders have signed up. It costs $150 to be a soloist, $170 for a two-person team and $350 for a five-person team.
To sign up, go to (www.grizzlyevents.ca) and look for the Power of 8 Buffalo Pound.
Mitochondrial disease is a group of disorders that comes in many shapes and varieties, said Adeel Safdar, a researcher at McMaster University in Hamilton, and the chief scientific officer for MitoCanada.
Each condition involves a dysfunction of the mitochondria, tiny structures found in almost every cell in the body with the exception of red blood cells.
The mitochondria transforms food and oxygen into energy, creating more than 90 per cent of the energy needed by the body to sustain life.
Mitochondrial disease is most severe in children, but there has been an increase in adult-onset disease.
“There is no such thing as just one symptom for this disease,” Safdar said. “The majority of the disease is considered as multisystemic where many tissues and organs in the body get affected ... You can have a whole host of symptoms and problems.”
Symptoms can include exercise intolerance, fatigue, loss of balance, dementia, muscle weakness, digestive problems, heart disease, vision problems, trouble hearing, strokes and seizures.
“Too often, persons with underlying mitochondrial disease go undiagnosed for decades due to lack of awareness among both the general population and primary healthcare practitioners,” Safdar said.
An estimated 5.5 million Canadians have neurodegenerative disorders and secondary metabolic diseases related to mitochondrial disease including cancer, heart diseases and Type 2 diabetes.
Safdar noted Evan’s case is extremely rare.
“But when it does happen, of course it has a major impact on lifestyle and it affects a lot of tissues and organs in the body,” he said.
Mitochondrial disease can be inherited or it can develop due to spontaneous damage in the genetic makeup, he said.
While there is no cure for mitochondrial disease, in some cases, adults may be able to control the symptoms and slow down the progression by incorporating a regimen of diet, exercise and nutritional supplements.
“Exercise has been shown to be very beneficial at least in terms of improving their lifestyle and to some level delaying the detrimental effects of the diseases,” Safdar said.