Parents whose young son died of epilepsy have raised more than $400,000 of a $1 million goal to accelerate research and prevent further epilepsy-related deaths.
Édouard Boivin died on August 23 at the CHU Ste-Justine at the age of only 9.
For 2 weeks the intensive care, neurology and neurosurgery teams did everything to save him, but the epilepsy that had afflicted him for six years left him no chance.
“Édouard Boivin had tonic-clonic seizures, he also had absences,” explains his dad Claude-André Boivin in an interview with TVA Nouvelles.
Rather peculiarly, the boy was in perfect physical condition until he was 3 years old. There was no indication that he was going to be very ill.
“Overnight, with no explanation, no known cause, he started having dozens, and even days, hundreds of seizures… We had gained some control through surgeries and therapies, but still a refractory course”, explains Mr. Boivin.
By August 2021, her seizures had become more severe and were still longer.
“Quickly Édouard was hospitalized, and unfortunately, we were unable to regain the upper hand over the disease,” adds Édouard’s father.
A chronic neurological disease caused by disorders of electrical activity in the brain, epilepsy affects more than 45,000 Quebecers and 300,000 Canadians.
Nearly 80% of the 15,000 patients diagnosed each year are under the age of 18. Many of these young people recover thanks to medication, but 40% do not respond well to treatment and will have to be operated on.
Epilepsy kills about one in 1,000 sick adults and one in 4,500 young people.