Dravet.ca, a grassroots organization of family members, friends and caregivers of people living with a Dravet spectrum disorder, is gearing up for a family retreat it’s organizing Sept. 12-14 at Circle Square Ranch in Brantford.
The event will be an “excellent opportunity” for families of people living with Dravet syndrome or a Dravet spectrum disorder to connect and share experiences in a fun atmosphere, says Guida Clozza, Dravet.ca’s vice-chair.
The event will also be a chance for young children with a Dravet spectrum disorder to meet others who are also living with similar circumstances so they know they’re not alone, Clozza adds.
A key part of the three-day retreat will be for children to spend time with the ranch’s horses. Activities such as horse grooming and trail walking as well as fishing, archery and rock-climbing, will also be available.
Because external factors such as hot weather can trigger seizures in people with a Dravet spectrum disorder, there will also be indoor activities, such as crafts, puzzles and movies, to ensure the weekend’s events are fully inclusive.
“We are hoping everyone feels like they’re part of a greater community,” Clozza says. “We want everyone to know that we’re there for them as a community and that there is support for them. That’s the key — for families to know they’re part of a community.”
Ankie Werdekker, Dravet.ca’s secretary, says events like this are important because Dravet spectrum disorders can be isolating for families.
“A lot of families think they’re going through this alone, but we’re all in the same boat here and we need to break the cycle of isolation that sometimes families put upon themselves for the sake of their kids, so they can be as normal as they can be, and get out into an environment,” she says. “For parents, it’s great to have the support of other people.”
Dravet.ca is hoping to see as many families as possible attend the retreat. It’s also an affordable event, Clozza notes, adding that the cost of two adults and one child attending will be $120, all-inclusive. Local families wishing to attend on the Saturday will only be charged $55.
The event’s registration is now open. The deadline for registration is July 31. Click here for more details.
On Sept. 20, Dravet.ca is hosting its third annual fundraiser, Walk for the Kids, at Constance Bay Community Centre in Woodlawn, Ont. The event will include a three-kilometre walk, face-painting, a silent auction, a fundraising barbecue, raffles and entertainment.
Dravet syndrome is a form of intractable epilepsy. Dravet.ca is the Canadian counterpart to U.S.-based Dravet.org . Much of Dravet.ca’s work is focused on educating families and the public about Dravet spectrum disorders through conferences, family retreats and lectures to the medical community, and collecting and disseminating information about Dravet spectrum disorders.
Writer: Deron Hamel
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