When we think of people who advocate for children who are living with epilepsy, we often think of mothers, but in many cases fathers are the unsung heroes when it comes to peer networking and searching for ways to enhance their children’s quality of life.
In recognition of June 16 being Father’s Day, Voices of Epilepsy recently spoke with one such father. Meet Carl Weatherell. Carl’s 10-year-old daughter, Alyssa, is living with Dravet syndrome, a form of intractable epilepsy.
Carl has been involved with the epilepsy community since Alyssa was diagnosed with Dravet syndrome as an infant. He has joined support groups, been involved with peer networking and advocated for Alyssa by educating people about Dravet syndrome and seizure disorders.
Education, says Carl, is a crucial part of epilepsy advocacy for the simple reason that most people don’t recognize the seriousness of seizure disorders. Explaining the seriousness of epilepsy to people he knows, as well as to the people connected to Alyssa, such as teachers, is an important way Carl advocates for his daughter.
Carl says when he explains the serious impact seizure disorders have, many are surprised. Unfortunately, most people mistakenly believe epilepsy is little more than a neurological disorder where people occasionally have seizures, but then come out of the seizure and everything is fine.
“(Epilepsy) is catastrophic and people need to understand that; the impact on society and families is massive,” he says, adding epilepsy does not just affect people on a physical level — for instance, a large number of people with epilepsy live below the poverty line.
A testament to Carl’s advocacy work is his connection to Dravet.ca, an online portal for families and caregivers of people with Dravet syndrome to connect and find support. Carl was one of several parents of children living with Dravet syndrome in the Ottawa area who recently launched the site.
Carl became connected to the grassroots group through peer networking on Facebook. Dravet.ca is the Canadian arm of U.S.-based Dravet.org.
With about one in every 100 Canadians living with epilepsy, the disorder is also a lot more prevalent than most people realize.
“The number of people (affected by epilepsy) is roughly the same as the number of women who have breast cancer, yet the amount of support for (epilepsy) is (much) less,” Carl says.
“The challenge is getting people to believe these numbers. As a parent, I didn’t believe the numbers until they were given to me.”
Writer: Deron Hamel
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