Édouard. Everything starts with a name. His is derived from the much older Eadweard, which combines “ead” meaning “rich and blessed” and “weard” meaning “guardian.” Making Édouard the “guardian of the treasure.”

Édouard left us on August 23, taking the key to the treasure with him. We never were able to unlock the mystery of his complex disorder, epilepsy.

For more than two weeks at Sainte-Justine, the intensive care, neurology, immunology, neurosurgery and genetics teams left no stone unturned in a last-ditch attempt to (finally) find the cause behind the seizures that racked Édouard’s perfect little brain for nearly six years. But despite their expertise and everything they did to treat him, it was impossible to stop things from taking a sudden and extreme turn just as we got home from our incredible vacation in the Gaspé Peninsula.

Édouard, my son

My dear son, anyone who knew you can confirm this: you were everything you were meant to be and more. Tender and loving, with a warm smile that could light up a room, and an irresistible and insatiable interest in other people. Your curiosity was boundless and your intelligence, radiant.

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Thank you for letting us see life from another angle, through the lens of unconditional kindness, and teaching us that living in the moment is all that matters. You knew that, Édouard, and we owe you a huge debt of gratitude for that lesson. You brought out the best in us and changed every last cell of who we are forever.

You made us grow as a family. You opened our hearts. You are our pillar of strength and always will be, my brave little boy.

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Léo, Charlotte and Édouard
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Édouard and Sainte-Justine

“When you lose someone close, you don’t lose the love you have for them. It’s like there’s an invisible thread there that still connects you. Keep talking to him. He’ll answer in his own way.” These are the words of Dr. Marc-Antoine Marquis, a palliative care physician.

The thread connecting us to our son is strong, indestructible and eternal. And, through it all, another invisible thread has been woven: the one that binds us to Sainte-Justine.

For most people, going to the hospital is something to dread. Walking through the doors of Sainte-Justine is frightening, even panic-inducing. But for our family, we saw our appointments as an opportunity to fill up on hope. They were special moments where time stood still, and our worries and concerns vanished, if only for a short while. At Sainte-Justine, we had a team, our bulwarks, a family we could lean on. We weren’t alone.

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This same resilient and determined team of caregivers did everything they could up until the very last day to find a solution for Édouard. They were by our side as we wept, powerless to change the cruel reality that medicine simply didn’t have any more answers for us.

Édouard and his village

Laurence and I know that our grief will be the extension, and the measure, of the love we have for Édouard. But we believe that destiny is what life puts on our path. Destiny is what we choose to make of it.

Édouard, my bright, shining boy, you were the wings that lifted us up. For you, we would’ve flown all the way to the moon. I like to think that these wings will eventually lead us to the answer that unlocks your treasure. We will use them to keep flying, in search of our quest, only differently than before.

Now, we are pushing forward and daring to dream of a world without epilepsy. To honour the life and courage of Édouard, working with the CHU Sainte-Justine Foundation, we are starting up a fund to fight epilepsy: the Fonds Édouard Boivin. Our goal is to raise $1 million to help gain a better understanding of the disorder and have an impact on the more drug-resistant forms, to help all those who are living with it every day.

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Our objective is an ambitious one, but it is necessary if we are to rise to the challenge of finding a cure. It is based on solid foundations: a team who shares our vision and who has the expertise to find answers in a timely manner. Laurence and I firmly believe that, with the support of Édouard’s village, we can make this happen.

To the team at Sainte-Justine and the Foundation: losing Édouard doesn’t mark the end of our journey with you. Quite the opposite. Because family is the strongest thing of all. And you will always be part of ours. The battle we all fought together, by his side, is not over just because he left us, far too soon.

Édouard, the guardian of our treasure, you may have left your village behind, but it is still right here. Together, we will unlock this mystery. We love you.

Claude-André Boivin
Father to Édouard, Léo and Charlotte

*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.

It takes a village to heal a child

In September, an incredible groundswell of support arose in the fight against epilepsy, as hundreds of donors responded to an appeal from Laurence and Claude-André to donate to the Fonds Édouard Boivin.

Who was at the front of the line? Hugo, Édouard’s second cousin, also a Sainte-Justine patient. He invested the proceeds from his garage sale, making him the fund’s very first donor.

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© klmotionmedia | Hugo with Édouard's sister and brother, Charlotte and Léo (at left), and Alice (at right)

Not far behind him was Édouard’s great-uncle, Pierre Boivin, a driving force behind this initiative. On behalf of the entire family, he pledged to match all donations made up until October 2, 2021, the date of Édouard’s celebration of life. More than $172,000 was raised in a matter of days, bringing the fund to a third of its goal. It is currently valued at more than $350,000.

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Thank you to Édouard’s family for keeping his spirit of resilience alive by continuing his fight against epilepsy. And thank you to all those who have been part of Édouard’s village and are helping it grow even bigger.