If someone told you that you would soon lose your eyesight, what would you do? This question made perfect sense eight months ago to Canadians Edith Lemay and Sebastian Peletier. Three of the four children were diagnosed with a rare eye disease that leads to blindness. Wanting their children to create visual memories before their eyesight faded, they decided to travel the world for a year to showcase beauties and enrich their memory. Edith and Sebastian have been married for 12 years. Mia, the oldest daughter, is 12, Leo is 9, Colin is 7 and Laurent is 5.
The problem was discovered when the parents realized that something was wrong with Mia’s vision at age 3: she used to get up at night and bump into furniture or walls. She also couldn’t see well in darker environments, and was taken to an optometrist, and then to an ophthalmologist. He asked for genetic tests – but the disease was only detected when the genomes of the daughter and parents were made. Mia, then 7 years old, was diagnosed with retinitis pigmentosa, a degenerative disease of the retina that causes eye cells to slowly die. It was subsequently discovered that two other children, Colin and Laurent, had the same disease. “Our first reaction was despair and shock. You dream about their future and suddenly you have to redo it all,” says Edith.
She soon considered having the boys learn Braille, but an expert explained that her daughter’s eyesight was still good — and the best thing would be to put images in Mia’s head, like looking at elephants or giraffes in a book. The mother turned things around right away: even better would be to create visual memories in real life. Last March they left for their first destination, Namibia. In these eight months the family has traveled to six countries: in addition to Namibia, Zambia, Tanzania, Turkey, Mongolia and Indonesia. He is currently in Indonesia, from where they will head to Malaysia, Thailand and Cambodia. Studies have not been left out: they take the distance course.
From March to now, what was your favorite show? For Colin, he took the train to Tazara, on a line connecting Tanzania and Zambia. Laurent enjoyed ballooning in Cappadocia, Mia enjoyed horseback riding in Mongolia and Leo loved the Kilimanjaro Mountains in Tanzania. “It’s going well, they teach us beauty, through their eyes. What they think is beautiful is what we think is important”, says Edith.
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The goal is for children to create visual memories, but also learn to be resistant, because with the disease, they will need to adapt all the time. “I hope this helps them a little. Sometimes when you travel, it can be uncomfortable, we can be hungry, we can be tired, so they have to adapt all the time”, concludes Edith.