Family taking world tour before children lose their vision

Canadian family taking world tour before children lose their vision

Tamara Hardingham-Gill, CNN • Published 12th September 2022

(CNN) — Their daughter Mia was just three years old when Canadian couple Edith Lemay and Sebastien Pelletier first noticed that she was having vision problems.
A few years after they first took her to see a specialist, Mia, the eldest of their four children, was diagnosed with retinitis pigmentosa, a rare genetic condition that causes a loss or decline in vision over time.
By this point, Lemay and Pelletier, who’ve been married for 12 years, had noticed that two of their sons, Colin, now seven, and Laurent, now five, were experiencing the same symptoms.

Their fears were confirmed when in 2019 the boys were diagnosed with the same genetic disorder; their other son Leo, now nine, was given the all clear.

“There’s nothing you can really do,” says Lemay, explaining that there is currently no cure or effective treatment to slow down the progression of retinitis pigmentosa.
“We don’t know how fast it’s going to go, but we expect them to be completely blind by mid-life.”When Mia’s specialist suggested that they engross her with “visual memories,” Lemay realized that there was one truly incredible way that they could do just that for her and the rest of the children. “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,” she explains. “And I’m going to fill her visual memory with the best, most beautiful images I can.” She and her husband soon began making plans to spend a year traveling around the globe with their kids.

While Lemay and Pelletier traveled together frequently before they became parents, and had taken their children on various trips, going on an extended trip as a family hadn’t seemed feasible before. “With the diagnosis, we have an urgency,” adds Pelletier, who works in finance. “There’s great things to do at home, but there’s nothing better than traveling.
“Not only the scenery, but also the different cultures and people.” They soon began trying to build up their savings, and their travel pot received a welcome boost when the company that Pelletier worked for and had shares in was bought. “That was like a little gift from life,” admits Lemay, who works in healthcare logistics. “Like, here’s the money for your trip.”
The family of six were originally due to set off in July 2020, and had planned an in-depth itinerary that involved traveling through Russia by land, and spending time in China.