When a pair of Canadian parents learned three of their four children will gradually lose their vision due to a rare genetic disease, they were devastated.
Edith Lemay and Sébastien Pelletier went through a grieving process — rife with sadness, anger and a search for a miracle for retinitis pigmentosa, a hereditary condition without a cure. As their new reality sank in and they accepted the diagnosis, the parents came up with a once-in-a-lifetime idea for their family of six.
“That’s their path — let’s make the best out of it,” Lemay said from their Quebec home Tuesday. “That’s when you can go on with your life.”
Lemay and Pelletier decided to take their four children — Mia, 11; Léo, 9; Colin, 7; and Laurent, 5, — on a trip to see the world. Léo, their eldest son, is the only one without the gene.
At first, the goal was to fill the kids’ visual memories with “beautiful things” before their eyesight falters. As they set out to explore, it quickly evolved into an even more enriching experience. Aside from taking in gorgeous landscapes, they met new people, discovered different cultures and learned about other ways of life.
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“Over and above the visual memories that they got, I think they got a great human experience altogether,” Pelletier said.
Plans were made, and scrapped several times, as the COVID-19 pandemic unfolded but the family eventually boarded a flight in March 2022 to Africa. Lemay documented their travels with great care, sharing photos and videos of magical moments with the online world.
From riding noisy dune buggies through the Gobi desert to watching in awe as a lion slowly ate its prey on a Namibian safari, they did all kinds of activities during their time abroad. Their boys were even happily surprised with a trip to Legoland in Malaysia.
The six of them packed in dazzling sunsets and hikes over the span of a year in destinations like Thailand and Namibia. At one point, the family decided to head to Nepal and Oman around Christmas to slowly wrap up their trip.
Aside from giving their children an opportunity to take in different parts of the world, both mom and dad also experienced everyday moments through their kids’ excitement. Their son Colin loved his stay at a hotel in Zanzibar because five cats lived there and it’s a memory he cherishes.
“As parents, you also evolve and seeing, you know, you see it through different eyes,” Pelletier said. “And seeing anything can be amazing — not just the big things or the big temples or the big sights.”
As their year-long, magical trip came to an end in April, the family is happy to be back home in Quebec. The parents are open with their children about the rare eye disease so they can help one another when the time comes and so losing their vision doesn’t come as a complete shock.
They consider themselves lucky in a way.
“There is always a chance that something’s going to happen to your child,” Lemay said. “You might have a disease. So at least we see it coming.
“We have time to prepare and, in a sense, it’s a blessing. Like, that trip is a blessing in its own right.”
— with files from Global News’ Mike Armstrong and Amanda Jelowicki
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