When Edith and Sébastien learn that three of their children will gradually lose their sight, they refuse to stay spectators. A click, and they embark on a crazy project: go around the world in the family to engrave as many images as possible in the memory of their “coconuts”.
Come to the world by being able to see what surrounds us, the people we love, then lose our sight of day. This is what three of the children of Edith and Sébastien, a Canadian family are living. Mia, Léo, Colin and Laurent are still very young when their parents decide to have their sights tested by a doctor. At the time, the eldest of the tribe struggled to see in the dark, but no one expects the diagnosis: Mia, Colin and Laurent suffer from a pigment retinitis. The culprit? A defective gene, the PDE6B, which gradually damages the cells of their ocular retino, and condemns them to lose their sight, without knowing when. Above all, there is no possible treatment.
At the announcement of the diagnosis, it is the shock wave. Edith and Sébastien understand at this moment that their lives and those of their children are about to change forever. A multitude of questions then arise in the heads of parents, who prefer at first to say nothing to their “coconuts”, as Edith likes to call them. And while they are trying somehow to find solutions, one day, the couple has a click. During a simple discussion with a professional specializing in visual impairment in schools, Édith hears this sentence: “The best thing you can do for your children is to fill their visual memory”. It immediately makes sense to the mother, who talks about it to her spouse.
“The idea of making a long family trip already trotted us in our heads, because we like to travel, but it was only a dream. There, we said, we have to do it, we can’t take it anymore to move back”, she told us during our exchange. Without even realizing it, they had just laid the first stone of their project: a family tour of the family of just over a year to show their children the beauty of the world. And that’s what they did. After having reviewed their plan many times because of the Pandemic of Covid-19, they left in March 2022 of Quebec to fly to Africa, more precisely in Namibia. Then direction Zambia, Tanzania, Turkey, Mongolia, Indonesia, Malaysia, Thailand, Cambodia, Laos, Nepal, Oman, Egypt, Ecuador and Colombia.
A rich, but also challenging adventure. “The most difficult was to be with the children 24/7. We were never alone, we were six all the time, even to sleep”, Remember Edith, who immortalized their journey in photos on their Instagram account @pleinleursieux. Despite certain inevitable difficulties of a family trip, this experience has opened their eyes to many things. Lessons that can speak to everyone in the end. “I think that when we face challenges that life imposes on us, we have no choice but to face. But you have the choice of how you will react; you can be undergoing or acting. I Believe that when you are in action, it allows you to pass through. beautiful in your life, it makes it easier “, underlines the mother.
The couple also had a lesson in their children. “They taught us what the definition of beauty is. We went by wanting to show them what the beauty of the world is, but very quickly, we realized that children have their own definition because they know Break up for nothing. ‘amaze. she adds.
Since their return, in April 2023, the tribe has resumed the course of their lives in Quebec. All six come out of this long journey, the disease is now part of their daily lives, even if Edith admits that this is not a subject they are talking about on a daily basis. “They are still children, they live in the present moment and it does not worry them more than that. For example, Mia is very positive, her sight is good for the moment so she benefits”. A great lesson in life!
After having documented their project on Instagram and via a blog, Edith Lemay decided to put words on what they have experienced in a book, full of their eyes (man editions), published on February 6, 2025. way for her to leave a written trace to her children when they have completely lost her sight. The book is also available in audio format for hearing impaired.