Their daughter Mia was just three years old when Canadian couple Edith Lemay and Sebastien Pelletier noticed that her eyesight was beginning to deteriorate. Retinitis pigmentosa, a rare genetic condition that causes vision loss over time, was the difficult diagnosis. Two of their three other children, Colin and Laurent, were also found to suffer from the same condition. You can give up, but the Canadian couple chose a different, positive path: They decided to take their children on a world tour to let them experience as many visual experiences as possible while they still can.
The young children Mia, Colin and Laurent must learn to cope with the knowledge that their sight will gradually decline and that one day, probably somewhere in the middle of life, they will be completely blind. Their brother Leo, now aged 9, is the only one of the four children who did not inherit the genes that cause the condition from his parents.
“There is nothing you can really do,” says mother Edith Lemay, explaining that there is currently no cure or effective treatment to slow the progression of retinitis pigmentosa. After the initial shock, the couple immediately decided to help their children build the skills they need to navigate their way through life and cope with their future vision problems.
“Give her plenty of visual memories to draw on later,” advised the specialist who treated Mia. Edith and Sebastien took that advice to heart. They made the radical decision to take their children on a visually stimulating world tour for a year. “I thought: I don’t want to show Mia an elephant in a book, I want to take her to see a real elephant,” says Edith. “And I want to fill her visual memory with the best, most beautiful images I can.”
The couple set about building a piggy bank and got a financial windfall when the company Sebastien worked for and had shares in was sold.
In March 2022, when most of the covid travel restrictions were eased, they packed their bags and left their home in Montreal. Before they left, the Lemay-Pelletier family made a bucket list of experiences for their trip. Mia wanted to ride a horse, while Laurent wanted to drink juice on a camel.
They started their journey in Namibia, where they got to see elephants, zebras and giraffes up close, before heading to Zambia and Tanzania and then flying to Turkey, where they spent a month. The family then made their way to Mongolia before continuing to Indonesia.
“We really try to show them things they can’t see at home and have the most incredible experiences,” says father Sebastien.
The couple also hope that their trip around the world will help their children adapt to the ever-changing living conditions. “They’re going to have to be really robust their whole lives,” said mum Edith.
“As difficult as their lives will be, I wanted to show them that they are lucky to have running water in their homes and that they can go to school every day,” says Edith.
The family shares their travel experiences through regular updates on their Facebook and Instagram accounts.
Edith and Sebastien admit that the diagnosis is always in the back of their minds, but they say they live in the moment and “put their energy into the positives.” “This trip has opened our eyes to many other things and we really want to enjoy what we have and the people around us,” says Sebastien.
Secretly, the couple hopes that science will advance and that one day there will be a treatment that will ensure their children can keep their sight. “We’re keeping our fingers crossed for that. But we know it can happen, so we want to make sure our kids are prepared to face those challenges.”