Alain Coudé

We just lost a great friend. A great man. A man like no other. Alain Coudé died Monday morning and that’s unfair. Especially in these special times, when we couldn’t even greet him one last time, kiss him, tell him how we loved him, or even accompany his lovely Louise and his beloved twins, or hug them tightly. Death is unfair, even more in this pandemic time, and mostly in his specific case. Because he shouldn’t die. Not him, not now. We don’t often meet people who don’t have the right to die.

Alain’s history is unique. And too short. It took an unexpected turn a few months after the birth of his twins diagnosed with Andermann Syndrome, a very rare neurodegenerative disease. Thirty years later, another dramatic turn happened. He was diagnosed with cancer.

Between these two major turning points, he took action with a million of significant gestures. He took care of his daughters with the greatest dedication, “his gentle chickens” as he called them, while he was the papa-hen, and this, we were told, until his very last breath. He was so afraid that they would catch Covid-19 (because their lungs are very fragile) that even from his hospital bed, he managed to create a cocoon around them, away from the virulence, eliminating all sources of potential danger.

All those who crossed his path were forever marked by his boundless generosity, his kindness, his immeasurable strength and his contagious optimism. Turning the negative into the positive is what Alain always wanted and knew how to do. He chose to be a happy man. In addition to his engineering profession, he devoted his life to improving the conditions of seriously ill children – those of his daughters in particular – by creating with his wife, the “Coudé Twin Foundation” in 1991. He contributed in the great advancement of the research on sensory-motor polyneuropathy and thus slow its progression. He offered support to many families with a child affected by this disease, and even recently created an annual scholarship for academic graduates working on various neurodegenerative diseases. In addition, he has been intensely involved in various organizations and committees such as “Le Phare, Enfants et Familles”, “Académie Zénith”, “Le Grand défi Pierre Lavoie” and “Le Défi des Collines”. André cared about the well-being of children, sick children and their families.

His friend Louiselle Paquin, former CEO of “Le Phare”, who resume it well “Alain was actively involved in Le Phare, Enfants et Familles, an organization dedicated to pediatric palliative care and end-of-life care for seriously ill children, as well as supporting their families. Alain and his wife Louise are recognized as “founding parents” in the small visionary team that conceived and brought this project to life in 1999. In 2007, “Le Phare” opened “Maison André-Gratton”. Their daughters, Alexandra and Valérie, inaugurated it and lifted the first shovelful. They brought their comments and their appreciation to the construction committee, thus helping to ensure that the needs of the clientele are respected. Alain was Chairman of the Board of Directors from 2000 to 2001 and he sat on the board until 2010. In addition, Alain shared his expertise as engineer to “Le Phare, Enfants et Familles”, as a member of the construction committee and on several initiatives in the history of the organization which is now recognized as a leader in pediatric palliative care in Quebec.

This great man had with a singular destiny. He will never be forgotten. His commitment was extraordinary. He changed each action to great. Millions of great actions. Every day, every hour, every minute. And as he said so well “You have to live one minute at a time”. His last minutes came too quickly.

Alain, the ingenious engineer and the man with the overflowing heart, has therefore spent his life fighting for the quality of life of his daughters. He wanted them happy, to stay alive as long as possible in the best possible conditions. He dedicated his life to postponing the death of his daughters, almost denying it; only his death that he could not repel. His minding: everyone before him. Exactly like his Louise. Birds of a feather flock together.

These two, moreover, loved each other immeasurably. Several couples having a child with a fatal disease separate in the years following the diagnosis. With twins: obviously not in the statistics. But until his death, separation was a word they had never known. They celebrated their 40th wedding anniversary a few summers ago. They loved each other with true love despite the chaos of their lives, despite the lack of sleep, despite their seasons without vacation, despite their days without respite and their nights always incomplete, despite the rigidity and intensity of their daily lives, despite the accumulated fatigue and their ever-shaken intimacy. In fact, they loved each other even more deeply. Inspiring lovers. They admired each other, respected each other, held each other hand in hand, until Alain’s very last breath. Their separation is absolutely sad.

Together they have been able to accomplish tremendous things. The departure of Alain is not the end of their great love story. Everything they have built together will continue to grow. Their Foundation will never cease to bear fruit.

We deeply hope that André crossed the finish line on his beloved road bike, rolling a smile on his face, delivered and tasting happily a good beer from a Quebec microbrewery, as we often did togheter on Sunday afternoons.

Dear Alain, we drink to you, to your greatness, to your immensity. We will never forget you, dear friend. We will watch over your dear Louise and your two lovely “chickens”, just like those who loved you so much (and there are many!)

Sylvie Cadorette and Maryse Latendresse