Eighth annual Dravet Walk does it again

CONSTANCE BAY – The weather cleared up and after a short delay last Saturday (Sept. 21), more than 300 people took part in a leisurely stroll to contribute to the huge pile of cash Constance Bay’s Dravet Walk has raised over the last eight years.

In seven years the Dravet Syndrome Walk in Constance Bay has raised a staggering $370,000 for research in to the devastating disease for the American Dravet Syndrome Foundation, Dravet.ca in Canada and the Ontario Brain Institute and Eplink.

With another great turnout last Saturday, some 325 participants, it is no doubt the fundraiser will top $400,000 in total.

West Carleton Online dropped by the event just before noon, had a very brief chat with organizer Mandy McKnight who had to take off to join the walk, and then a longer talk upon her return, hand delivered to us in a small locomotive pulling three rail cars behind it. True story.

We told you there was a train. Photo by Jake Davies
We told you there was a train. Photo by Jake Davies

“It was amazing,” McKnight said of the three-kilometre walk. “The train (there to entertain the younger crowd) picked me up along the way.”

The walk was slightly delayed due to slightly unfavourable weather, but the sun came out, brought a lot of heat with it, and participants were able to enjoy a leisurely walk with the beautiful signs of fall starting to show their colours.

McKnight describes Dravet Syndrome as “a catastrophic form of epilepsy – very difficult to control.”

The disease, which McKnight’s 11-year-old son Liam suffers from, also played a role in the delay. Liam is very sensitive to the weather and adverse conditions, like heat, can trigger seizures. But the show did go on and everyone was able to enjoy the day.

“It’s pretty amazing,” McKnight reiterated. “Everyone comes out.”

And local schools help out, like Liam’s school St. Michael’s Fitzroy Harbour which raised $1,400 the day before the event with its own fundraiser.

McKnight says about 60 volunteers help with the massive organization of the event including another 30 West Carleton Secondary School students.

From left, Liam's nurse Rachel Moyes and EA Dianne Bates volunteered their time to run the bake sale. Photo by Jake Davies
From left, Liam’s nurse Rachel Moyes and educational assistant Dianne Bates volunteered their time to run the bake sale. Photo by Jake Davies

“They register and then they ask me what they can do,” McKnight says of her team of volunteers. “It’s awesome.”

Not only is there a walk, but the Constance Bay volunteer firefighters host a barbecue, there is a bake sale and several inflatable play structures on hand to keep the kids busy and having fun.

Constance Bay's volunteer firefighter gave their time to run the barbecue. Photo by Jake Davies
Constance Bay’s volunteer firefighter gave their time to run the barbecue. Photo by Jake Davies

McKnight is the lead organizer the past eight years with her husband Dave. They have four kids in total including Ava, 15, Maya, 13, Liam and Finn, 2. They all help with the event.

“I think this community is amazing,” McKnight said. “I can’t imagine living anywhere else. Liam’s educational assistant and nurse are volunteering their time at the bake sale. We have super friends, family, neighbours, even strangers. It’s amazing.”

The whole gang squeezes in to one massive photo. Photo by Marc Brisson
The whole gang squeezes in to one massive photo. Photo by Marc Brisson