Sooke family hopes to win dream bike for daughter with disabilities

Sooke family hopes to win dream bike for daughter with disabilities

Five-year-old Willow Clark is now that much closer to winning her dream bike — the ET2611 Tandem — which is tailored for people with disabilities.

“Willow was born with a really rare genetic syndrome called DDX3X syndrome,” her mother Lorelei Clark told CHEK News.

“She was diagnosed several years ago and when she was diagnosed, she was only number 199 in the entire world that has ever been diagnosed with this condition,” she continued.

According to the DDX3X Foundation, this rare disease was first discovered in 2014 and mostly affects girls due to its location on the X-chromosome.

“It is linked to intellectual disabilities, seizures, autism, low muscle tone, abnormalities of the brain, and slower physical developments,” reads the website.

Conditions vary as some children are able to speak, while others are non-verbal, like Willow.

“She’s five and she hasn’t had an easy life so far. She’s been through a lot more than most adults had ever had to go through,” said Lorelei.

Unlike some children with the condition, Willow can walk, run, jump and ride bikes, which she loves to do.

She’s been riding bikes since she was two, but she quickly outgrew the bikes given to her.

So now her parents hope to win the ET2611 Tandem, which would allow both Lorelei and Willow to explore the outdoors together in an active way.

“With her on her own with a bike, she doesn’t get very far because she has some physical limitations,” explained Lorelei.

The bike costs more than $10,000, which she said they can’t afford.

“It’s not really something we can justify affording and it would take forever to try and raise that kind of money,” she said.

The Great Bike Giveaway, a special annual contest that aims to help children with disabilities, is giving them a chance to win it for free.

They can win by votes, a draw or a fundraiser and Willow’s neighbours want the bike to be hers.

‘There’s a lot of divide in the world right now and it’s really sad and kind of scary and the amount of support and the community coming together to vote for Willow has been amazing,” said Lorelei.

“It’s been really heartwarming, the kind of response that we’ve got and how many people are cheering for her,” she continued.

Craig Clark, Willow’s father, said he would be “overwhelmed” if they won the bike.

“[I’m] just really excited and very blessed for all the community and all the help and support that we’ve had,” he said.

While hundreds of other families are competing, the Clarks are currently ranked first to win their dream bike.

Voting is open until March 16 and fundraising until March 30.

Tahmina AzizTahmina Aziz

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