When her son, Olivier, was diagnosed with a peanut allergy at 18 months old, Sophie Beugnot went into “solutions” mode. It was her way of dealing with the fear that something serious would happen to him. She hoped to desensitize him to the life-threatening allergy before he reached his teens. The problem was that the treatment he needed wasn’t yet offered in Quebec.
When Olivier was younger, the only way to deal with his allergy was total avoidance. The result was an almost constant state of anxiety and fear, which is all too often the fate of parents of children with severe food allergies. Sophie set out to read everything she could find on the subject. That’s how she heard about immunotherapy, a treatment that was becoming more and more widespread in the U.S.
I had joined a Facebook group where I kept seeing pictures of children digging into pieces of cake stuffed with allergens they had been desensitized to. It looked like such a stress-free way to live. Which was the opposite of what we had with my son.
In 2014, Sophie sat down with Dr. Anne Des Roches, her son’s immunologist at Sainte-Justine, to find out why this course of treatment wasn’t being provided here in Quebec. That’s when she learned that Sainte-Justine had just recruited Dr. Philippe Bégin, an allergy specialist who had trained in the U.S. and was looking to open a clinic in Quebec. But he needed lots of resources – and lots of money – to do it.
Sophie embraced the challenge head on. In no time, she had organized a benefit hockey tournament and brunch. The $20,000 she raised was no trifling sum, but it was still a far cry from what it would take to get a desensitization clinic up and running. The event was nevertheless the jumping-off point for bringing together a community of parents in support of this initiative, which in turn led to the creation of ByeByeAllergies.
In 2016, a parent committee was formed with a clear mandate to raise $750,000. The members rolled up their sleeves and worked tirelessly to help increase the project’s visibility and persuade the Quebec government to back the undertaking.
The first major donor was the Presti Foundation, which contributed proceeds from its 2017 gala to the clinic’s first year of operations. Other donors and partners of CHU Sainte-Justine Foundation and ByeByeAllergies subsequently joined the fray, including the Air Canada Foundation and the Blanchard-Malouin family. It wasn’t long before the $750,000 target was reached, guaranteeing that the clinic would get off the ground.
On August 31, 2017, Quebec health minister Gaétan Barrette held a press conference at Sainte-Justine to announce the official opening of Canada’s first non-research oral immunotherapy clinic (OITC), as part of a pilot project partially funded by the provincial government and spread out over three years. This was a major victory for Sophie and her fellow parents.
It’s really a domino effect. When I started this, I was all by myself. But I was soon joined by a great group of parents, and they were followed by sponsors, donors, foundations and the government. Our grassroots movement has since raised $1.2 million. Something of this scale simply can’t be accomplished by one person.
The Future of Immunotherapy
So far, 250 patients have been or are being assessed by the clinic. The program’s success rate is about 80%, and there have been no serious incidents. Best practices are being rewritten daily so a whole new group of allergists can be trained in Quebec. Children who exhibit allergy symptoms can now live in hope as they hear the inspiring stories of young “graduates” like Olivier.
I am so proud of my mom! I was really lucky to be one of the first people treated at the clinic. Before that, it was frustrating to have to always be so careful at restaurants. Now, I don’t have to anymore! I can eat a lot and I love food… everything except for peanuts, that is!
Desensitization turns an invisible and unpredictable enemy into something you can see and plan around. We know there’s a risk when Olivier takes his dose and for the following two or so hours. After that, he’s safe. It’s very reassuring.
In her current role as president of ByeByeAllergies, Sophie is working closely with her board of directors – all parents and dedicated volunteers – to help open five other major treatment centres across the province. Their dream is to make sure desensitization treatment is available, in a timely manner, to every child who wants it – and all with the same safe, personalized approach as the one provided by Sainte-Justine.
I’ll always remember the day Olivier was discharged from the clinic. From the first treatment onward, we knew he was protected from the risk of being exposed to traces of peanuts. Our life changed forever. Nothing gets to me more than when I talk to other parents who are going through the same thing now as we did then. My wish is for every family living with a food allergy to have that same moment of relief we had!
*Past and present board members of ByeByeAllergies who have helped trigger the domino effect: Marie-Claude Bélanger, Annie Boisvert, Alexandre Charbonneau, Hugo Coulombe, Marie-Julie Croteau, Cynthia DiFruscia, Mélissa Gopalkrishna, Jérôme Lanthiez, Catherine Malouin, Lina Paolini, Catherine Saint-Arnaud, Anne-Sophie Tetreault.
