An Okotoks boy became an inspiration to many last week when he crossed the finish line at the Scotiabank Calgary Marathon.
Jason Arbib finished the 10K event in 1:11:13 using a hand cycle. The eight-year-old has been wheelchair bound since he was diagnosed with cerebral palsy spastic diplegia at age two.
Spastic diplegia is characterized by tense muscles and spasms, particularly in the legs, which causes joints to stiffen and reduces the range of motion. Often the torso muscles are also affected.
Melanie Arbib, Jason’s mother, said the diagnosis came when he wasn’t able to reach milestones like walking as an infant.
“He was a late walker, but everyone thought he would be fine,” said Arbib. “But he wasn’t quite fine. He would fall over easily when he was cruising furniture or trying to take those small steps, or even sitting up.”
He’s had therapy in Montreal to help build his core strength, she said, but the brain damage can’t be undone and he will never walk well.
To keep active, Jason has taken on activities like skating and skiing with the help of adaptive equipment, like special harnesses and frames to hold onto. Arbib said it’s nice for the family to be able to get out and be active together.
“We find activities that unite us as a family,” said Arbib. “It’s important to find things Jason can do with us, or ways for him to participate.”
Cycling was difficult for Jason to begin with, she said. He had a modified pedal bike and couldn’t ride very fast. But when someone recommended he try the hand cycle, it was an entirely different story.
The family borrowed a cycle and he began training with it, then decided he should enter the Scotiabank Calgary Marathon – less than a month before the event. He wanted to join the Charity Challenge and raise money for CP Kids and Families, to help other people with cerebral palsy get access to adaptive bikes.
“I asked him if he wanted to do the 1K or the 5K, and he was like, ‘No, I’m doing the 10K,’” said Arbib. “Of course I had to be able to go with him, so I had to go from couch to 10K in three weeks.”
She attached a walkie-talkie to the back of Jason’s bike, which was decorated as Batman with “Team Jason” written on the cape, so she could communicate with him along the route.
“I kept telling him to slow down and wait for me,” said Arbib. “At one point I got to about 25 feet behind him and he gave me a wave and took off.”
He crossed the finish line six minutes ahead of his mom, and was surrounded by admirers in the Calgary Stampede Grandstand afterward.
“People were coming up to him and hugging him and said he was their superhero,” said Arbib. “It was incredible.”
Arbib said she was proud of how well he did, managing to pedal and steer the bike, as well as ring the bell to let other runners know he was coming up on them.
Lasting for over an hour and pedaling for 10 kilometres is no small feat for Jason, who can only walk about five feet at a time, she said.
“Anything he does takes three to four times the amount of energy it takes us,” said Arbib. “So if he walks 20 feet, it’s like walking 80 feet. Doing 10K on the hand cycle for him was like completing a full marathon for anyone else.”
Two days after the race, Jason was ready to take on another 10K and is looking forward to entering other events, she said.
“I’m still aching and he says he’s fine, which is a little unfair,” said Arbib with a laugh.
Jason set out with a fundraising goal of $1,000 and in less than a month he raised a total of $1,155. It’s a fraction of the cost of a hand cycle, which go for at least $4,000 US, said Arbib.
She said he was happy just to be part of the event and know he was helping other kids like him in some way.
“He’s a very determined, amazing young man,” said Arbib. “To have so many obstacles in his way, to overcome so much in his life, he’s an inspiration to everyone. He’s showing people if you want something, go out and do it – it’s achievable.”
Besides taking on sports and delivering the paper in his wheelchair, Jason also speaks two languages and attends École Beausoleil in Okotoks
School principal Ginette Beaulieu said Jason is part of the family of École Beausoleil, a “very bubbly child” who always gives his best effort.
“He’ll always try his best to do whatever he sets his mind to do,” said Beaulieu. “It may not be the same way others do it, but he will get there.”
Jason has his own computer at school to complete his work alongside his classmates and write fictional stories – one of his favourite activities.
Gym classes are often adapted to suit Jason’s abilities, such as playing t-ball rather than baseball or allowing him to play basketball in his wheelchair, said Beaulieu.
The students of École Beausoleil will be taking in a basketball game at Mount Royal University played by athletes in wheelchairs, and the children will also have the opportunity to experience playing in wheelchairs.
“The children don’t see him as different, and we want to keep the magic and not see him as limited,” said Beaulieu. “We need to teach that limits are sometimes set by the child themselves, not by others.”