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This article was published 15/5/2017 (1010 days ago), so information in it may no longer be current.
Chase Crowe can’t wait to start walking for a cause close to his heart.
The River Park South resident, who turned nine on May 16, will be among the contingent taking part in the Walk for the CAWS event at St. Vital Park on Sun., June 4.
The fundraising event is being held by the Canadian Association for Williams Syndrome (CAWS), which is a grassroots, parent-run, non-profit organization that supports individuals living with Williams syndrome, and their families.
According to the association, the genetic disorder affects around 1 in 10,000 people and is caused by the deletion of chromosome seven. The spectrum disorder can be accompanied by developmental delays, learning disabilities, and medical and cardiovascular problems.
Individuals living with Williams syndrome often have strong memories, hyper-sensitive hearing, and are extremely personable and friendly.
Chase’s mom, Coralee Crowe, is the president of CAWS, and she’s working to raise awareness and create better public understanding about the disorder by encouraging community members to take part in the upcoming walk.
To help heighten the awareness and education further, the organization is also holding a conference between Aug. 3 and 6 — titled Bright Lights, Big Dreams — at the Sheraton Centre Toronto Hotel, which will include specialists, mainly from the U.S. The event, which is held every four years, allows families from across Canada to share their experiences, learn from each other and network.
"From an awareness perspective, there are limited research dollars, especially in Canada, and we don’t have specialists in Canada that deal with Williams syndrome. The conference is a way for lots of families to feel connected," Crowe said.
This is the fourth year the Winnipeg walk has been held, and the June 4 event will involve walking around the park a couple of times, and there will also be a barbecue lunch, sponsored by Sobeys, a clown that’s handy with balloons, and live folk music.
"The biggest thing is that we don’t want any other family having to go through this alone and face the unknown," Crowe said, noting Chase was diagnosed when he was 14 months old.
"We had two overriding emotions before we knew Chase had Williams syndrome — trying to figure out what was wrong and trying to figure out what to do as we navigated the unknown and tried to work out what things meant."
In terms of Chase’s future, Crowe is hopeful there will be the "medical, educational and social supports to allow Chase to realize his full potential" as he gets older, but she also knows that research development is crucial.
The disarmingly friendly Chase, who attends H. S. Paul School and before- and after-school programs at Ashworth Children’s Centre, said he’s looking forward to talking to people and meeting people at the walk, and he enjoys visiting garden centres and watching things happen, especially when heavy-duty machinery and diggers load and unload dirt, sand and gravel.
For more information, go online at www.wshappywalk.com or visit the Canadian Association for Williams Syndrome: Manitoba Chapter on Facebook.
Community journalist — The Lance
Simon Fuller is the community journalist for The Lance. Email him at firstname.lastname@example.org Call him at 204-697-7111