When Canadian couple Edith Lemay and Sebastien Pelletier learned three of their four children had retinitis pigmentosa, a rare genetic condition that causes a loss or decline in vision over time, they decided to make the best of a less than ideal situation: they embarked on a world tour full of “visual memories.”
Lemay and Pelletier’s daughter Mia, 12, and sons Colin, 7, and Laurent, 5, were diagnosed with retinitis pigmentosa while their eldest son, Leo, 9, was given the all clear. There is currently no cure or effective treatment to slow down the progression of the condition, and the Quebec couple expects their children to be “completely blind by mid-life."
In an interview with CNN, Lemay said that when Mia’s specialist recommended she engross her daughter with “visual memories,” the mother-of-four ran with the idea.
"I thought, 'I'm not going to show her an elephant in a book, I'm going to take her to see a real elephant. And I'm going to fill her visual memory with the best, most beautiful images I can," Lemay said.
The family began to build up their savings, Lemay working in healthcare logistics and Pelletier in finance. And when the company that Pelletier worked for and had shares in was bought, their travel pot received a welcome sum of money.
After the pandemic halted their initial travel plans, the family of six eventually left Canada in March 2022 and are now out on the road without an itinerary, planning “as we go,” said Lemay, “maybe a month ahead.”
Their goal is to focus on sights — animals, flora and fauna — and experience things they wouldn’t be able to at home. They began their trip in Namibia, where they saw elephants, zebras and giraffes. Then, they headed to Zambia and Tanzania, before landing in Turkey for a month. Onto Mongolia, and Indonesia.
"They're going to need to be really resilient throughout their life," Lemay said, explaining that the family wants Mia, Colin and Laurent to have coping skills as they will have to constantly re-adjust as their eyesight worsens. "Traveling is something you can learn from. It's nice and fun, but it also can be really hard. You can be uncomfortable. You can be tired. There's frustration. So there's a lot that you can learn from travel itself."
Lemay and Pelletier, who have been documenting their family’s travels on social media, hope that experiencing different countries and cultures will show their children how fortunate they are, despite their own visual challenges.
"No matter how hard their life is going to be, I wanted to show them that they are lucky just to have running water in their home and to be able to go to school every day with nice colorful books," Lemay said of her “super curious” children, who are being home-schooled on the road.
"They easily adapt to new countries and new food. I'm very impressed with them,” she added. "And we never know what's going to impress them. We will tell ourselves [they will think] something is wonderful and then they see puppies in the street and it's the best thing in their life."
Although they know challenges await, Lemay and Pelletier are hyper-focused on the positive and giving their children the best experiences they can to help them in the long run. And the parents have noticed a strong bond forming between the siblings, which they hope will solidify a support system for life.
"We never know when it can start or how fast it can go," Pelletier said of the effects of retinitis pigmentosa, "so we really want to take this time as a family and to cater to each of our kids to be able to live this experience to the fullest."
The family plans to return home to Quebec next March, but are currently really trying to “enjoy what we have and the people that are around us," said Pelletier, who’s hopeful that science will find a solution for his children’s condition.
"My little one asked me, 'Mommy, what does it mean to be blind? Am I going to drive a car?'" added Lemay. "He's five. But slowly, he's understanding what's happening. It was a normal conversation for him. But for me, it was heart-wrenching."
If there’s one thing for certain, it’s that the Pelletier children are lucky to have parents who are setting them up for success, no matter the barriers.