By Jenn Watt
Published Feb. 15 2018
When Bethan McCutcheon is out in Minden with her two boys Tecwyn and Tathan they’re greeted with smiles and friendly banter. Her kids are included at the park and welcomed in the grocery store.
Tecwyn and Tathan have Angelman Syndrome a disorder that can affect motor and verbal skills and often includes seizures problems with sleep and gastrointestinal issues.
McCutcheon’s kids are two of three in the community with the disorder and she says that awareness raising over the years has led to acceptance.
“Because the town knows about my boys we are treated differently” she said in response to questions via email.
“For instance one time we went grocery shopping out of town and I was asked by a teller if my kids were from a group home. It was a really strange interaction. I’d never get that from our grocery store in town. Instead I’d hear ‘Hi Tecwyn. Hi Tathan’” she said.
Part of the awareness raising comes from an annual event called Catch the Cure planned for Saturday Feb. 17 an inclusive daylong event in Minden with a list of activities and prizes too long to list in a newspaper article. Among them public skating a hockey game face painting a community dinner Kawartha Dairy sundaes tobogganing silent auction and a scavenger hunt through the businesses in town.
In its fifth year the event raises money for the Foundation for Angelman Syndrome Therapeutics which has received $65000 through the event so far.
“From the start our crazy idea of having a winter fair that was affordable to everyone was embraced by our family and friends” McCutcheon said. “People volunteering and kids making decorations community businesses displaying posters in their windows and now businesses participating in a town scavenger hunt … it’s such a team-inspired event.”
Most activities are pay-what-you-can or by donation.
Catch the Cure is organized by McCutcheon and Sue Tiffin whose daughter Harper also has Angelman Syndrome.
The name came during a brainstorming session about fundraising.
“We literally want to catch the cure” McCutcheon said. “We can see it ahead of us and we are running toward it or skating in our case.”
Aside from people in town knowing the names of Harper Tecwyn and Tathan over the years the knowledge of the syndrome has been building.
“I’ve heard my [Facebook] friends share stories about going to the local park and kids shunning their children and commenting in a hurtful manner about their drool” McCutcheon said. “And again this is something we wouldn’t experience in our town as the kids in the community know my boys and know they drool because of low tone and we are ‘drool-friendly.’ I think when you understand you see differently.”
Fellow students have also learned that Angelman Syndrome means McCutcheon’s boys communicate with tone and volume rather than words. When they’re excited they raise their voices which to some could be perceived as yelling.
She said it was encouraging that parents and kids asked questions and created a dialogue which improved understanding.
“The kids in this town are the future community leaders parents therapists researchers and this awareness and take-action initiative will shape them” she said.
Catch the Cure starts at 1 p.m. and runs until 8 p.m. at the S.G. Nesbitt Memorial Arena and Community Centre in Minden on Saturday Feb. 17. To find out more search Catch the Cure on Facebook.