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To order presentation-ready copies of Toronto Star content for distribution to colleagues, clients or customers, or inquire about permissions/licensing, please go to: www.TorontoStarReprints.com Canada THREE OF THEIR KIDS ARE GOING BLIND. BUT FIRST, THEY GOT TO SEE THE WORLD IT WAS A KIND OF GEOGRAPHIC IMPROV FOR THE QUEBEC FAMILY WITH FOUR KIDS, THREE OF WHOM HAVE A RARE GENETIC DISORDER THAT DAMAGES THE RETINA. SM By Steve McKinleyStaff Reporter Fri., May 5, 2023timer4 min. read * * * * * * JOIN THE CONVERSATION Eleven-year-old Mia Pelletier is riding carefree, a huge smile plastered across her face, on a wide-open steppe in the heart of Mongolia. For two glorious hours her world is boundless; here, on the steppe, under a vast blue sky, there is nothing but the horse beneath her and the wind in her face and a landscape stretching out in front of her in every direction as far as her eyes can see. She can go anywhere, do anything; here there is nothing to stop her once she touches her heels to the horse’s flanks, as scrub grass blurs beneath her, as the low swell of hills on the horizon draws infinitesimally nearer. Later, in the telling of it, it’s clear this is a memory she will carry with her for a lifetime. Video Player is loading. Play Video Play Mute Current Time 0:00 / Duration 1:22 Loaded: 11.91% 0:00 Stream Type LIVE Seek to live, currently behind liveLIVE Remaining Time -1:22 1x Playback Rate Chapters * Chapters Descriptions * descriptions off, selected Captions * captions settings, opens captions settings dialog * captions off, selected Audio Track * en (Main), selected Fullscreen This is a modal window. Beginning of dialog window. Escape will cancel and close the window. 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Play Mute Current Time 0:00 / Duration 0:00 Loaded: 0% Stream Type LIVE Seek to live, currently playing liveLIVE Remaining Time -0:00 1x Playback Rate Picture-in-PictureFullscreen #TheMoment Montreal family travels the world before kids go blind 2 weeks ago 1:22 One that will remain vivid even as her sight begins to fade. That’s the reason she’s here, on this horse, on this plain in Mongolia, with her parents and three brothers, two of whom share the same condition. She’s harvesting “visual memories,” storing them ahead of the time when the harvest runs bare. This is part of Mia’s destiny; that at some point in the next few decades her vision will begin to narrow. Sometime after that, likely by the time she hits 40, it will be gone forever. Skip Advertisement ADVERTISEMENT “Those (wide-open) landscapes are the first things they’re going to lose,” says her mother, Edith Lemay. “It’s the field of vision that’s going to shrink. Slowly they’re going to lose 180 (degree) vision and it’s going to get smaller and smaller. They say towards the end it’s like looking through a straw.” And then … nothing. The condition is called retinitis pigmentosa. It’s a rare genetic disorder that damages the cells of the retina — the light-sensitive tissue at the back of the eye. It affects between one in 3,500 and one in 4,000 Canadians. Most of those are legally blind by the time they hit 40. It afflicts Mia, now 12, and her brothers Colin, 7, and Laurent, 4. Leo, at 10, is the only one to be spared. In March 2022, Lemay, partner Sébastien Pelletier and their children left their home in Boucherville, Que., for Namibia, the start of a yearlong, multi-continent odyssey, its goal to expose the children to as many new people, places and experiences as possible — to capture and store those visual memories. They traversed Africa, west to east, through Zambia to Tanzania. There was a month in Turkey, then 45 days in Mongolia before heading to Southeast Asia for six months. They spent Christmas in Nepal and did a nine-day trek in the Himalayas. Then it was Egypt, followed by an early return to Quebec to surprise family for Easter. It was geographic improv — they planned as they went along, says Lemay, guided, not so much by the places, but by the kids’ bucket list of activities. They wanted to go surfing. Mia wanted to ride horses. Laurent, the youngest, inexplicably, wanted to drink juice on a camel. They watched the sun come up in a dozen countries. It was sometimes dicey — a hike in the dark to the top of a Namibian dune only to be sandblasted by the wind as the sun rose — and sometimes otherworldly — watching a fiery orange line of sunrise descend from the top of snow-covered peaks in Nepal as the children danced in the first snow they’d seen in nearly a year. At sunrise, in Cappadocia, in Turkey, they rode hot-air balloons that rose so smoothly that Mia didn’t even realize they were airborne until the ground began to recede. In Zambia, while visiting Victoria Falls, one baboon distracted them at lunch while others stole their food. In Tanzania, in the Kalahari Desert, they were stunned by a random up-close encounter with a giraffe. Mia rode horses. Laurent drank his juice on a camel in Mongolia. Memories were collected, polished and stored. Mission accomplished. But there was more to it than that, more than dog-eared passports and Lemay’s vast trove of photographs. By the time they returned to Canada they were different people than the ones who’d left. Mia sees that change in herself, an internal breakdown of barriers. She’s less shy, more resilient, more adventurous than when she left, she says. “I feel different. I adapt better. I’m more resourceful. I learned to not be scared and to just go do it. “I think of all the positive things instead of the negative.” RELATED STORIES Canada THREE OF THEIR FOUR CHILDREN WILL GO BLIND. SO THIS CANADIAN COUPLE HAS TAKEN THEM ON A YEARLONG TRIP TO GIVE THEM SIGHTS TO LAST A LIFETIME Apr. 03, 2022 Those are traits Lemay believes will serve them well in the years ahead. “When we left, the goal was strictly to fill their visual memories, to get them to see beautiful landscapes. But then, during the trip, I realized there was so much more that they could learn from it.” Most importantly, she wanted them to learn what Mia clearly has — to adjust to any situation, to be resilient, to focus on the positive. “They’re going to need to adapt all their life, because their vision is going to change all the time,” she says. “It was really cool to see those skills in them.” Mia herself doesn’t think much about her future; she’s learned to live in the present moment, she says. And her present moment involves school, a small group of friends and the surprising normalcy of life back in Canada after a year on the road. And when she steps out of that moment, she’s far more likely to recall flying across the Mongolian steppe astride a horse than she is to dread a world that slowly grows darker. For her, right now, there is the present and the memories she has and the ones she’s yet to make. Because she’s not done yet; when school is over for the year, she and her family will pack up and hit the road once again — destination still to be determined. SM Steve McKinley is a Halifax-based reporter for the Star. Follow him on Twitter: @smckinley1 SHARE: * * * * * * Skip Advertisement ADVERTISEMENT * Report an error * Journalistic Standards * About The Star JOIN THE CONVERSATION Q: Anyone can read Conversations, but to contribute, you should be a registered Torstar account holder. 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