When Édith and Sébastien learned that three of their children would gradually lose their eyesight, they refused to stand by idly. Motivated by a sudden inspiration, they embarked on an ambitious project: to travel the world as a family and capture as many memories as possible for their “little ones.”
Imagine being born with the ability to see the world and the people you love, only to lose that ability almost overnight. This is the reality for three of Édith and Sébastien’s children, a Canadian family. Mia, Léo, Colin, and Laurent were very young when their parents decided to have their eyesight tested because Mia was having difficulty seeing in dim light. The diagnosis was unexpected: Mia, Colin, and Laurent were suffering from retinitis pigmentosa, caused by a faulty PDE6B gene that gradually damages the cells in their retinas, inevitably leading to blindness with no known cure.
The diagnosis sent shockwaves through the family. In that moment, Édith and Sébastien realized that their lives and those of their children were about to change forever. Initially hesitant to burden their children with the news, whom Édith affectionately calls her “little ones,” the couple struggled to find a way forward. Then, during a conversation with a school vision impairment specialist, Édith heard something that clicked: “the best thing you can do for your children is to fill their visual memory.” She immediately shared this with Sébastien.
“The idea of taking a long family trip had been on our minds because we love traveling, but it was just a dream. Then, we thought, we have to do this; there’s no turning back,” Édith shared in our conversation. Unbeknownst to them, they had just laid the foundation for their project: a world tour lasting just over a year to show their children the beauty of the world. After several adjustments due to the COVID-19 pandemic, they departed from Quebec in March 2022, heading first to Namibia in Africa, followed by Zambia, Tanzania, Turkey, Mongolia, Indonesia, Malaysia, Thailand, Cambodia, Laos, Nepal, Oman, Egypt, Ecuador, and Colombia.
The journey was enriching yet challenging. “The hardest part was being with the kids 24/7. We were never alone; it was always the six of us, even in our sleep,” Édith recalls, who documented their adventures on their Instagram account @pleinleursyeux. Despite some inevitable difficulties of traveling as a family, the experience opened their eyes to many things. “When you face challenges that life throws at you, you have no choice but to confront them. But you can choose how you react; you can either let it overwhelm you or take action. I believe that taking action helps you get through it. If you just wait for it to pass, it takes over. Focusing on what’s beautiful in your life makes everything easier,” Édith highlighted.
The couple also learned a valuable lesson from their children. “They taught us what beauty really means. We set out to show them the world’s beauty, but soon realized that children have their own definition because they marvel at the simplest things, like kittens, flowers, or insects. While we adults have lost the ability to marvel, we often fail to appreciate the present moment,” she added.
Since returning in April 2023, the family has resumed their life in Quebec. The journey has left them all enriched; the disease is now part of their daily life, though Édith confesses it’s not a frequent topic of conversation. “They’re still kids, living in the moment and it doesn’t bother them much. For instance, Mia is very positive; her vision is good for now so she’s making the most of it”. A true life lesson!
After documenting their project on Instagram and through a blog, Édith Lemay has decided to put their experiences into words in a book, Plein leurs yeux (Les éditions de l’Homme), released on February 6, 2025. It’s a way for her to leave a written legacy for her children when they lose their sight completely. The book is also available in an audio format for those with hearing impairments.
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