Sometimes you can feel alone when your child is living with a seizure disorder, but when you meet others going through the same issues and challenges as your family, the burden can feel a little lighter.
This is the experience Andy and Dawn Bellefeuille say they walked away with from Dravet.org’s recent 2012 biennial conference in Minneapolis.
Having this connection with other families was a vital part of the experience for the couple, whose eight-year-old son, Sean, has Dravet syndrome.
“To me, that’s an ace in your pocket knowing that you’re not alone,” says Andy.
The Bellefeuilles, who are from the Ottawa area and were joined in Minneapolis by their neurologist, say they met parents of other children with Dravet syndrome from across Canada and around the world. The couple is now keeping in contact with the other families via e-mail and Facebook.
“Every once in a while, when you don’t hear from somebody for a while, you say, ‘Hey, is everything OK?’ ” says Dawn.
In fact, during the conference, called Advancing Research and Enhancing Comprehensive Care: Progress for Patients with Dravet Spectrum Disorders, the Bellefeuilles were introduced to two other Ottawa-area families they had never met before. One of the fathers actually works next door to Dawn, in a surprising coincidence.
“That alone was worth it; just the personal contacts we made,” she says.
The benefit of having made these connections, says the couple, is that they now have a tighter network of people who understand the issues they’re facing. They can also share information important to parents of children with Dravet syndrome, they say.
In fact, as a show of support for one another, the Bellefeuilles were joined by the other Ottawa-area families in a Sept. 29 walk to raise money for the Dravet Syndrome Foundation.
The walk was organized by the board for Dravet.ca, an online portal a group of parents with children who have Dravet syndrome is trying to launch as a sister site to the U.S.-based Dravet.org.
Sessions at the conference included identifying Dravet syndrome, information about genetic factors to the disorder, seizure management, and cognitive and behavioural development in children with Dravet syndrome.
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Writer: Deron Hamel