After Learning Their Kids Were Going Blind, This Family Embarked on World Tour to Create Visual 'Souvenirs'

·4 min read
After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'
After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'

Courtesy Edith Lamay

Four years have passed since Edith Lemay experienced her most "devastating" moment as a mother—and now she's in the backseat of a taxi with her husband and four kids speeding across Bali, trying to catch a ferry to a nearby island before it leaves port.

In 2019, over a period of six months, Lemay learned that three of her children—Mia, now 11, Colin, now 7, and Laurent, now 5—were diagnosed with the rare genetic disorder retinitis pigmentosa that doctors believe will eventually cause them to go blind by midlife. (Miraculously, Leo, now 9, shows no sign of the disorder.)

"You don't want to believe that it's true," Lemay, who lives in Montreal, tells PEOPLE during her ride to the harbor. "It was really hard. As a parent, you have this vision of what your children's lives are going to be like and suddenly you have to rethink all of that."

When a specialist recommended that Lemay start "filling up" her kids' visual memories of the world around them by looking at photos, the shellshocked mother hatched a plan.

After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'
After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'

Courtesy Edith Lamay

"She told me, 'You can look at books and show them what an elephant or a giraffe looks like,'" recalls Lemay. "And that's when it clicked. I thought to myself, 'We're going to take them to see elephants and giraffes in real life. And we're going to do more than that. We're going to show them our beautiful world….before it's too late.'"

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Lemay and husband Sebastien Pelletier's heartbreaking mission involved embarking on a year-long world tour, allowing their kids to experience firsthand all the sights and sounds of the planet before they lose their vision.

"We're determined to fill their visual memories with nice souvenirs, so that once they're blind they'll have so many nice pictures in their head that they can refer to," says Lemay.

The pandemic forced the family to postpone their journey for nearly two years. But this past March—using the funds that Pelletier earned when the company he worked for (and had shares in) was purchased—the family finally headed to Namibia.

After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'
After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'

Courtesy Edith Lamay

"We didn't really have an itinerary because it felt too complicated, so we decided to go there because it was open and then we'd plan it from there," says Lemay, who was soon crossing the African continent with her family in countless buses, trains and taxis. After their time in Africa, they flew to Turkey for a month, then traveled to Mongolia and on to Indonesia.

"So many of the places we've traveled to don't have running water or electricity and the kids don't get to go to school," she says. "We want them to understand how fortunate they are, even if they have this sad condition."

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Tragically, at this point there is no solution for the genetic disorder that will one day rob the siblings of their eyesight. Lemay, who had never heard of retinitis pigmentosa before her children's diagnosis, explains that the disease—which slowly destroys the cells in the retina—has already begun to take its toll on her kids' vision.

"It's started already," she says. "They're all really struggling with their night vision. When it gets dark, they can't see anything….You slowly lose your field of vision from the outside to the inside, so it's like looking through a straw."

RELATED: Dad Invents Toy That Teaches Braille to His 2-Year-Old Daughter Who Is Going Blind

After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'
After Learning Their Kids Were Going Blind, This Family Embarked On A World Tour To Create 'Visual Souvenirs'

Courtesy Edith Lamay

Photos from their journey are even being used to inspire children at a school for the blind that's near the family's home in Montreal. According to Lemay, a teacher there has been following their trek on Instagram and describing the pictures to her students.

"It's just so heartwarming to be able to share this with them," she says. "It's another way for these children to explore the world."

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Besides memories, Lemay and Pelletier are convinced that their odyssey will also provide their kids with the important skills that they'll one day need to navigate the world once they lose their vision.

"They're going to need resilience to adapt as their vision changes and that's what traveling helps teach you," Lemay says.

"We're not staying in fancy five-star hotels. Sometimes the conditions can be a little rough and frustrating. And there are times they find themselves hungry and uncomfortable," she adds. "But they're learning that any situation, no matter how difficult, can eventually get better if you focus on finding a solution."