For most runners at Tamarack Ottawa Race Weekend, the blistering heat took centre stage. But for Julie Drury, it didn’t matter.

Along with the sweat, she battled tears.

Julie’s goal was not just to survive her eighth marathon. It was about something bigger. It was to raise funds and awareness for mitochondrial disease, a disease her daughter Kate died from six months ago.

“Everyone’s talking about the heat,” said Julie Drury. “But I’m like, ‘Bring it on.’

“I know what suffering is. I’ve seen it first hand, and this isn’t (it).”

Life was too short for eight-year-old Kate Drury. She died of a rare type of mitochondrial disease known as SIFD.

The disease can cause debilitating physical and intellectual disability, including loss of muscle co-ordination, muscle weakness and pain, seizures, vision or hearing loss, gastrointestinal problems and organ failure. There’s no cure.

Julie organized a group of 150 runners to fundraise and race in her daughter’s memory for Ottawa’s Race Weekend.

Her goal: to raise $42,000 to represent the 42.195 kilometres she ran on Sunday.

“It was hard,” said Julie. “Finishing that last stretch on Queen Elizabeth, I was crying.”

Kate’s death came suddenly, nine months after a bone-marrow transplant that went “terribly wrong”.

“I would run a marathon every day if I could have her back,” said Julie.

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Kate’s brother Jack, 11, was her donor. He donated his bone marrow to her nine months ago in an attempt to help slow her disease’s progression. On Saturday, he raced the 5K in her memory in a speedy 23 minutes.

On Sunday, Julie ran the full marathon with supporters cheering her on from the sidelines, including Jack and her husband, Brian Drury. This year, her supporters rolled 150 deep and all dressed in bright pink Team Mito shirts. It wasn’t hard to miss them in the crowds.

“(Kate) loved Ottawa’s Race Weekend,” said Brian.

This was the first year she wasn’t around to cheer on her mom and brother.

“There’s a lot of firsts without her,” said Brian. “You just feel raw.”

This is the first year the team has run in Kate’s memory after she died in November 2015.

“It’s been an incredible show of support,” says Julie. “The people who are signed up to run for us are friends, some are neighbours and there are some people who I’ve never met.”

People, including one of Kate’s nurses, travelled from Montreal to support Team Mito.

“There was a happiness about (Kate),” said Julie. “Anyone she met she made them feel like they were her best friend.”

Her family is still reeling from the loss, but Julie tries to channel her daughter’s happiness when she’s feeling down.

Julie continued to run through her grief with the encouragement of her friends, family and training partners. Just last month, she ran the Boston Marathon for the third time.

“The running has been getting me out of bed,” she said. “I could just feel her when I ran.”

It’s in Kate’s memory that Julie has surpassed her fundraising goal of $42,000 and expects to hit $50,000 by Monday.

MitoCanada has agreed to give all the money raised by Team Mito this year to a mitochondrial disease research group at the Children’s Hospital of Eastern Ontario (CHEO). The research group will focus on Kate’s rare form of mitochondrial disease, SIFD.

Kate was the first person in the world to be diagnosed with this rare form of mitochondrial disease. Her cells have been donated for the medical community to learn more about her disease and how to help others who are suffering.

While Kate’s form of the disease is rare, mitochondrial disease is relatively common and affects one in 4,000 people.

“It’s the biggest disease you’ve never heard of,” said Suzanne Steele, a close friend of the Drury’s, who also ran this weekend.

She hopes that the awareness Team Mito brought to mitochondrial disease will mean more research dollars so that doctors can find more treatments and, one day, even a cure.

Julie wasn’t alone in her purposeful running.

Jonathan Pitre, known as the “butterfly child”, pushed through incredible pain to complete the 5K race on Saturday.

The 15-year-old suffers from epidermolysis bullosa (EB), a rare and painful disease that causes severe blistering of the skin. His whole body must be wrapped in gauze to prevent blisters caused by any friction on his skin.

Pitre motored the full five kilometres, bandaged from head to toe and in his electric wheelchair, alongside his mother, Tina Boileau, and sister Noémy. The three ran with a number of supporters to raise money for DEBRA Canada, a charity dedicated to providing support for those affected by EB.

“I loved it,” said Boileau, the president of DEBRA Canada. “It was great to see everybody out.”

Pitre blasted down the track with his wheelchair moving at top speed. But even that wasn’t fast enough for his liking.

“I wanted to be able to go faster for (the people running with me),” he said. “‘Cause (the other runners were) just giving it, but I can’t.”

Though Pitre might not have finished as quickly has he wanted to, his participation in Saturday’s race was a testament to his perseverance and courage. Saturday’s heat meant that Pitre pushed through extreme pain and high heat to complete the race.

“I’m in a lot of pain,” he said Saturday after completing his race. “I can’t really soak in the water like everybody else, and I can’t take a cold shower.

“First thing I’ll do when I get home is put the AC on full blast.”

Pitre had beads of sweat building on his forehead as he sat at Confederation Park after the race.

“It was an accomplishment that I was able to do that, even though I was in a wheelchair,” he said.

Pitre got a bit of relief from the heat by a hand-held fan-spray bottle combo during the race. Runners running for team DEBRA would hold a fan for Pitre as they ran.

“For him to bring us across the finish line was very special,” said Noémy. “He’s been my biggest inspiration.”

Race Weekend was full of diverse and unique causes, including Peggy Hickman’s.

Hickman has heard voices in her head for the past 20 years. She took up running as a way to get away from them.

Hickman has schizophrenia. The voices she hears put her down and can slide her into a dark world. But when she runs, she can escape them for a little while.

“When I run, I can run faster than my voice,” she said. “It’s my chance to run by myself and leave it behind.”

Hickman, 60, pushed through the heat and completed the half-marathon on Sunday. She raced to raise awareness and destigmatize the illness that she’s been battling since the mid-’90s.

“(Schizophrenia) is still whispered about, ” she said. “We need to talk about it.”

Other mental illnesses such as depression and anxiety have taken centre stage in campaigns to destigmatize mental health issues, but schizophrenia is still pushed to the sidelines, said Hickman.

Increased dialogue and visibility of people with schizophrenia would help break down the stereotypes that exist.

“We’re not all scary,” she said.

Many people don’t talk about their illnesses because they’re too ashamed.

“There’s a lot of self-shame that goes along with this illness,” said Hickman. “It’s only recently that I’ve been able to share it.”

It’s an illness that you need to constantly manage. Finding coping mechanisms is key.

For Hickman, this means running and medication. Three years ago, her psychiatrist recommended that she try running to help cope with some of her symptoms. Now she’s hooked. Hickman runs about five times a week in a battle to manage her symptoms.

Hickman, with her team, Peggy’s Royal Messengers, raised $2,500 this year for The Royal’s schizophrenia program.

Their stories presented just three of the 61 charities that raised a total of $775,000 at Race Weekend. Many more go untold.

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