At three and a half years old, Édouard Boivin could identify peregrine falcons, cardinals and many birds. He knew how to cycle down a mountain and flash a smile even to the most embittered.
“He succeeded in everything he undertook, remembers Laurence Gauvin Couture. Then he started having speech and motor problems. The mourning accumulated, accumulated and accumulated… My little boy was never able to learn to read, because of his illness. »
Laurence was pregnant with her third child when she learned that her eldest son suffered from epilepsy. At the same time, she learned that the treatments work in about 70% of patients.
For Claude-André Boivin, Édouard’s father, “it was settled”. Everything would be fine. Laurence, she had a dark feeling.
In two months, Édouard went from an occasional attack to several a day. Quickly, it became clear: his epilepsy was drug-resistant. He was one of those for whom science has yet to answer.
PHOTO PROVIDED BY FAMILY
Edouard Boivin
However, the family or the healthcare team never gave up. Édouard underwent three brain operations and experienced a myriad of treatments. At this rate, death was not a likely conclusion for Laurence Gauvin Couture.
“I was much more afraid for Édouard’s future than the fact that he could potentially die. I wanted him to be independent and give him a normal life! When he passed away, I said to myself that there were many evenings when I should have cut the lessons and gone to play in the woods with him…”
But you know, as a parent, you have a responsibility not to give up and to give your child all the tools in the world.
Laurence Gauvin Couture
Édouard was hospitalized at CHU Sainte-Justine on August 5, 2021. Even though the situation was visibly serious, his parents believed in his chances of survival. “Edouard always got up,” his mother told me a few times.
Claude-André Boivin goes there with proof: a few years ago, the family took part in a race to raise funds for the CHU Sainte-Justine. Edouard had had an epileptic fit in the car on the way there, but he still wanted to be part of the event. He had waited for the start in the rain, shivering, then had rushed on the track like never before.
“I have an infinite well of admiration for this child,” slips his father.
Édouard died on August 23, at the age of 9. And on that tragic day when he couldn’t get up, his parents decided to do it for him.
PHOTO CHARLES WILLIAM PELLETIER, SPECIAL COLLABORATION
Laurence Gauvin Couture and Claude-André Boivin
Two weeks later, they were already imagining the Édouard Boivin Fund of the CHU Sainte-Justine Foundation.
That bereaved parents are so proactive overwhelms me.
Claude-André Boivin replies that for him, it was a way of saying: “Look, Édouard, it didn’t work for you, but we’ll continue, okay? Then he lets out a sob without apologizing. He assumes the tears that flow and I bow to his released emotions.
You know, the fund is our choice. We had so many things imposed on us… The fund is our decision.
Claude-Andre Boivin
Laurence and Claude-André believe in research. They both evolve in the health sector and are infinitely impressed by the CHU Sainte-Justine team. They want to give her more means so that she can unravel the mysteries of drug-resistant epilepsy. And they are convinced that the day when everyone will be entitled to the right treatment will come.
“The research center, we believe in it, sums up the father of the family. We have seen them in immunology, genetics, neurosurgery, neurology, pharmacology! We know what they are capable of. »
He adds that Édouard was fine in the hospital. He never entered it backwards or crying. Not only was he entitled to real expertise, but he was also entitled to a loving environment.
The couple’s goal now is to raise $1 million for the institute. He’s at $700,000. Laurence Gauvin Couture explains to me that the money will go into a capitalized fund, which means that once the million is reached, it is the return on this capital that will be distributed annually to the research teams.
I like to think that when you have children, you bring them to maturity. They go to school and find a job, and then they contribute to society in their own way. Édouard will help future generations. Sometimes I’m afraid we don’t talk about him anymore. I know that won’t happen, but… There, he’s going to be there forever.
Laurence Gauvin Couture
And his legacy will be multiple.
The couple will hold the second edition of the Défi Roule à fond on June 17. Some 300 cyclists will travel up Mont Loup-Garou, in Sainte-Adèle, to fill the foundation’s coffers. A one kilometer circuit will be reserved for children. Laurence and Claude-André see it as a way to introduce young people to philanthropy, to remind everyone to cherish their health, to raise public awareness of epilepsy – which affects 300,000 people in the country, 50% of whom are ignoring the cause of the disease – and showing the families coping with it that they are not alone.
“It’s hard to explain, but there’s so much life in this project… And there’s Édouard, at the root of it all. It’s a way to be with him without it necessarily hurting. You know, mourning, we still live it. It will never end and it must not end. Otherwise, it would mean that we would have exhausted all the love we have for our child. »