Each year, more than 15,000 Canadians are diagnosed with epilepsy, a brain disorder that affects an estimated 0.6 per cent of the population.
Yet, despite its reach, epilepsy remains widely misunderstood and stigmatized — a problem Janet Thorpe and her family want to challenge.
“As soon as you say ‘brain’ to most people, they think mental illness,” said Thorpe, whose late son, Jonathan Langille, was diagnosed with epilepsy at age 13. “And that’s where the problem lies.”
“Most people don’t understand it,” she continued. “Jonathan dealt with it all his life.”
Thorpe and her family are getting ready for the first Jonathan’s Legacy fundraising event on Sept. 20 in Bashaw. The event will raise funds for Epilepsy Canada, as well as other causes dear to Langille, who died in February at age 19.
The events planned include a talent show, pig roast and silent auction, all hosted at Bashaw Community Center, as well as a golf tournament at Bashaw Golf and Country Club.
In addition to Epilepsy Canada, the events will benefit Bashaw School’s drama and music programs, as well as Bashaw’s Majestic Theatre. Organizers intend to make the fundraiser an annual event.
“When Jonathan passed away, we decided to do something to help people,” said his mother. “Jonathan was all about helping people . . . We’re trying to change how epilepsy is viewed.”
Langille was struck by a vehicle at age 5, an incident his mother blames for the brain damage that triggered his condition.
By age 13, he had started suffering seizures, but his mother recalled that he rarely complained and tried to fit in as much as possible. However, his habit of wearing formal clothes ensured he stood out just the same.
He also wanted to avoid making trouble for others, going as far as wearing sunglasses to his high school graduation ceremony so that other parents could take flash photos without triggering a seizure.
Music and theatre were two of his passions; when his family moved to Bashaw in 2009, he became involved in the school’s band and theatre programs. As a teen, he joined the Elks service club, becoming one of its youngest members.
He also started acting with the Majestic Theatre, where director Jean Knutson recalled that he was “just a joy to work with.”
Though he was late in auditioning for his first play there, they found a role for him, and he ultimately performed in four productions. The theatre’s typical fare, comedies, proved a natural fit for Langille’s sense of humour.
“You could just tell he was really good right away,” said Knutson. “We knew that he could take on anything.”
Even after the family moved to Edmonton, Langille wanted to stay involved with the Majestic, and during the theatre season his mother would drive him there and back each weekend for rehearsals.
He was in the midst of his first year at the King’s University College in Edmonton, studying psychology and drama, when he died on Feb. 5, committing suicide at an LRT station.
While there were few answers at the time of his death, his mother believes his epilepsy played a role. She, herself, had been struck by a car earlier that day, and she said the stress of the news may have triggered an episode that led him to commit suicide.
“He was looking forward to the future,” said Thorpe, noting that he had plans to complete his master’s degree. “People who commit suicide don’t make plans.”
So far, the Jonathan’s Legacy project has attracted plenty of support, with more than $10,000 in merchandise donated for the silent auction.
Items donated range from a Robert Bateman book bearing a personalized sketch by the artist to rock memorabilia from the likes of Finger Eleven, Glass Tiger, Prism and Trooper.
For more information or to get involved, contact Thorpe by phone at 587-991-0700, by email at firstname.lastname@example.org, or look up “Jonathan’s Legacy” on Facebook.