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This article was published 31/7/2014 (1000 days ago), so information in it may no longer be current.
Waverley Leduc is a 10-year-old girl living with Rett syndrome, a neurodevelopmental disorder that robs her of basic core strength and intellectual ability over time.
Along with the wobbly stance and noticeable frailty, the condition also drastically limits her speech and causes seizures. It's a rare form of autism that doesn't lend itself to riding a bicycle -- a reality the Leduc family discovered early in Waverley's life.
"We tried to get her to ride a bike for years when she was younger, before she was diagnosed, but she wasn't strong enough to push a pedal," Colleen, Waverley's mom, said Thursday. "To see her able to push a pedal herself now, it's quite amazing. It's nice to see an activity that we enjoy together as a family -- she was never able to bike with us; we'd cart her in a bike wagon behind us.
"I can't tell you what it means to be able to do this as a group now."
Imagine daydreaming about the things you'll be able to do with your newborn child -- such as riding a bike -- only to have the reality set in that he or she isn't physically able to participate. The idea of a child riding a regular bicycle, a fun exercise measured with an independence often taken for granted, seems so simple, so automatic, that no thought really has to go into it until they can't.
Jamie, Colleen's husband, jumps in: "It's quite amazing. Often there are times where she'll ride without me steering and guiding her from the back. Her mobility is something that's really come along since she started riding."
Waverley's purple three-wheel bike, a beefed-up tricycle complete with basket and flowers, is a product of Freedom Concepts, a Winnipeg business that's been outfitting custom-made bikes for special-needs individuals (those living with cerebral palsy, spina bifida and autism, to name a few) for 23 years. What started as a favour to a therapist in 1991 (they were asked to build a bike for a child with cerebral palsy) has turned into an international operation, with numerous models of custom-fitted special-needs bikes finding homes around the world.
When it first started, the company was producing 20 bikes a year.
These days, with thriving markets in North America and Australia, approaching 20 bikes a week isn't out of the question.
Ken Vanstraelen is the owner of Freedom Concepts on Plessis Road in Transcona. For 23 years, he's been putting the trust of families in his hands, assuring them riding a bike is possible for a child who requires special assistance. His bikes are whatever you want them to be, custom-designed to fit the individual, not the other way around.
"The most difficult part is that most parents of special-needs kids don't believe their child can ride a bike," he said. "We spend a lot of time convincing parents to just try it once. The emotion involved when they see it that first time, it still hits me where it counts."
Typically, anything custom-made comes with an expensive price tag. Freedom Concepts' bikes range between $2,200 and $8,000, a number that scares off some parents who are already dealing with added-care costs for their child. Vanstraelen estimates more than 70 per cent of his time is spent working with therapists and parents on finding the right bike and figuring out how it will be funded.
That's where Christine Schollenberg comes in.
Schollenberg is the executive director of the Children's Rehabilitation Foundation, the fundraising arm of the Rehabilitation Centre for Children. They help pay for the bikes for children with complex disabilities all over Manitoba, a request that seemingly never ends as more families see the positives through increased mobility options for their child.
The specialty-bike waiting list is at around 20 families. Under the guidance of physiotherapists, who work with the children to identify specific needs, the RCC has about 30 specialty bikes available for loan. In many cases, families add their name to the list after the first ride.
"What we're giving them, above all else, is family time," Schollenberg said, stressing the importance of fundraising events and private donations to her operation. "I can't imagine anything that's more important than that. These bikes are giving children much more than just a physical challenge.
"The bikes are giving them some independence, some inclusion within the family unit. You can't put a value on that."