An Ottawa family who lost a son to Sudden Unexpected Death in Epilepsy (SUDEP) is trying to send a message to others that the disorder can be fatal.
Chris Hayduk-Costa died from SUDEP in September 2012, just five years after he was diagnosed with epilepsy and after beating cancer.
“He really believed in living in the moment,” said Barb Hayduk of her son, who was also a passionate musician.
SUDEP is not a disease or disorder, but more of a classification of death and means someone died without an apparent cause of death, even after an autopsy.
“I was absolutely shocked when we were told about that,” said Hayduk. “Like any sudden death you have a young fellow who seemed healthy and all of a sudden just passes away, it doesn't make sense.”
Chris’ father, Manuel Costa, says they want to share their experience with SUDEP because “Nobody has heard that there’s an increased [risk] of death when you have epilepsy.”
“We don’t have Canadian numbers, it’s kind of the elephant in the room,” Costa said. “It’s there and we just don’t know how big it is.”
The Canadian Epilepsy Alliance says 300,000 canadians are living with epilepsy. International numbers show that about one in 1,000 people with the disorder will die from SUDEP.
“By learning about it it's helped me understand it a little bit but at the same time I realize we have huge gaps in our healthcare system,” said Hayduk. “There are things that people can do to reduce their risk and Chris didn't know that.”
Things like keeping in contact with your doctor and taking medication consistently may reduce your risk.
Chris also beat cancer and as part of a wish from the Children's Wish Foundation, was able to jam with Nickelback.
He was posthumously awarded the Queen’s Diamond Jubilee Medal for his work with the foundation.
A fundraiser, with all proceeds going to SUDEP Aware, will be held at Sala San Marco on Friday Nov. 22.
Tickets for the fundraiser, which includes a cocktail reception, fashion show, silent auction and live entertainment, are still available.
Hayduk says they are turning a devastating loss into a promise to help others.
“It can't change our reality but at least if we can help other people that would help make some sense out of his death,” she said.
With a report from CTV’s Katie Griffin
