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A Family Decides to Travel the World Before Their Children Lose Their Eyesight

Every parent dreams of a bright future for their children. But for 3 Canadian kids, a genetic disorder that makes them slowly lose their vision has cast a big shadow on what their future will look like. So while they still have their eyesight, their parents decided to show them beautiful images from around the world. Bright Side reached out to them to find out more about their journey, and they generously shared their story with us.

Edith Lemay and Sebastien Pelletier first noticed symptoms of the disease with their eldest child, Mia.

When Mia was 3 years old, they observed problems with her vision at night and in the dark. “She would get up and start bumping into walls and furniture, and there are some things in dim light that she couldn’t see,” says Edith. They took her to a specialist and after undergoing genetic tests, Mia was diagnosed with retinitis pigmentosa — a degenerative retina disorder.

Their second child, Leo, was spared from the condition. But Colin and Laurent (the third and the youngest) have the same fate as their sister. “What it does is that the cells in the eyes slowly die, so their field of vision shrinks over time.” Edith explains that they don’t exactly know when the kids’ eyesight will completely disappear, but they are expected to be blind by midlife.

There are some promising gene therapy treatments for this disease, but they do not apply to the specific gene that affects the Lemay-Pelletier kids. “Yes, we have hope, but we don’t want to live waiting for a cure. We want to make sure we live the best life we can, and make sure we’re ready for the future with that disease. And if a cure comes, then we’ll be super happy.”

So they went on a mission to fill their children’s memory banks with beautiful sights.

The idea started when Edith and Sebastien made Mia study braille — the system of writing used by and for blind people — to equip her with the skills she will eventually need. The specialist told them that Mia’s vision was still too good for her to learn braille properly.

They were advised to fill her visual memory instead by showing her pictures of elephants or giraffes, for example, so she will have a reference when the time comes. “For me, that’s when it clicked. Let’s go show her elephants and giraffes in real life. That way, she’d really remember it.” So they saved up for a travel fund, and they finally began their year-long journey in March.

They don’t have a fixed itinerary, but the kids made a bucket list of the things they wanted to see.

“So Mia wanted to go horseback riding, Leo wanted to see Pokémons. Colin wanted to go on a train, and Laurent wanted to drink juice while riding a camel.” They began their trip in Namibia and crossed Africa all the way to the east coast. So far, their journey has also taken them to Turkey, Mongolia, and Indonesia.

Every place is amazing. Every person in the family has a different favorite place,” according to Edith. “Mia got teary-eyed after riding a horse, Colin enjoyed the 24-hour train ride we took through Tanzania. I think Leo’s favorite moment is when we did a hike at the foot of Mount Kilimanjaro.”

But one of the most special moments they shared as a family — which happens to be Laurent’s favorite too — was the hot air balloon ride in Cappadocia, Turkey. “All those hundreds of hot air balloons, and the color of the sky was pinkish, and it was just amazing. Even Leo said, ’Mommy, it looks like a dream.’”

Traveling with children has its challenges, but it also strengthened the siblings’ bond.

They are currently homeschooling the kids while they are on the road. Edith tells Bright Side, “The most challenging part for the parents is that we’re together 24/7, and sometimes we get tired. What we do is we give time for the other parent to cool down a bit or just have some breathing room.”

“But it’s not too bad. So far, it’s been working pretty well,” she continues. They also noticed a stronger link between the siblings, which they hope will continue into adulthood.

The trip has given both the children and the parents some valuable life lessons.

Kids being kids, they live in the moment. For example, we’ll bring them to a magnificent temple. But then they’ll see a nice, cute stray cat, and that’s going to be the most beautiful part of their day. And it’s okay because they also teach us about beauty through their eyes.”

Edith and Sebastien also hope their globe-trotting adventures will teach the kids about resiliency. “We’re not traveling in 5-star hotels or first class planes. When you travel, it can get really uncomfortable. There’s frustration, we can feel hot, we can be hungry, we can be tired. So they need to adapt all the time.”

“We’ve traveled to places where people don’t have electricity or running water, and children can’t go to school. I want them to realize how precious it is to be able to have good, fresh water out of the faucet,” Edith adds. But more importantly, they want their children to learn that they have a nice and loving family, who will be there to support them no matter what.

They have been documenting and uploading their adventures on social media in hopes of inspiring other people.

One teacher from a school for the visually impaired in Quebec regularly opens their Facebook page to describe their pictures to her students. “Somehow, they’re kind of part of the trip with us. To be able to share this with other people is a really nice gift that I’m really grateful for,” Edith mentions in one article.

The mom of 4 also told Bright Side that one lesson she hopes people will take away from their story is how to deal with big challenges in life. “It’s okay to be sad, be angry, and to go through all those emotions. But after a while, it’s important to accept the situation and look forward. Focus on what’s left in your life, that’s great because there’s always a beautiful thing in your life. You just need to make the choice to see it.

Did you find their story inspiring? What is your dream travel destination, or which among the places you’ve visited gave you the most beautiful memories?

Preview photo credit pleinleursyeux / Instagram
Bright Side/Family & kids/A Family Decides to Travel the World Before Their Children Lose Their Eyesight
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