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Couple take kids on year-long world tour before children lose their vision

By Naomi White|

When Edith Lemay and ?Sebastien Pelletier received the devastating news that not one, but three of their children would lose their vision, they made a plan.

Their children, they decided, would see the world, while their vision was still at its best.

Mia, now 11, was the first to be diagnosed with the rare genetic condition, retinitis pigmentosa when she was just seven. The degenerative condition causes the retina to break down slowly, eventually causing a loss of sight.

Canadian couple Edith Lemay and Sebastien Pelletier are taking their four children on a year-long world trip.
When Edith Lemay and ?Sebastien Pelletier received the devastating news that not one, but three of their children would lose their vision, they made a plan. (Facebook)

In 2019, two of her brothers, Colin and Laurent, now seven and five, were also found to have the condition. One brother, Leo, is unaffected. ?

Given there is no cure and no way to slow the progression of the disease, the parents had no way of knowing when their children would begin to lose their vision.

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So the couple, from Quebec, decided to put their current lives on hold and embark on a year long world tour to give them the opportunity to see as much as they can before it starts declining.?

However, while Lemay and Pelletier were ready to take a break from their jobs in healthcare and finance and set of in July 2020, the pandemic and travel restrictions suddenly halted their plans.

After a few years of having to continuously push their travel date back and revising their travel plans, they were finally able to begin their journey in ?March this year.

As the couple told CNN, there was an 'urgency' to hitting the road, when their specialist advised them to create visual memories their children could retain when their vision began to falter.

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"?I thought, 'I'm not going to show her an elephant in a book, I'm going to take her to see a real elephant," she told the network. "And I'm going to fill her visual memory with the best, most beautiful images I can."

Her husband agreed, saying while they don't have a set itinerary, they aim to make the most of each place and tick off a few 'bucket list' items, while also juggling homeschooling.

"We're focusing on sights," he said. "We're also focusing a lot on fauna and flora. We've seen incredible animals in Africa, but also in Turkey and elsewhere.

"So we're really trying to make them see things that they wouldn't have seen at home and have the most incredible experiences."

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The trip, they explained, was also a way to keep their diagnosis in perspective. By allowing their children to see how fortunate they are in other parts of their lives, they hope it will allow to better accept what will come. ?

"No matter how hard their life is going to be, I wanted to show them that they are lucky just to have running water in their home and to be able to go to school every day with nice colourful books," Lemay told CNN.

Beginning their trip in Namibia, they have since travelled through Tanzania and Zambia, spent a month exploring Turkey and most recently, travelled around Mongolia for five weeks with a local guide.

Currently, they're exploring Indonesia.

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?Documenting their journey on Instagram, Lemay highlighted that travelling with four children doesn't always go smoothly.

?"My coconuts are great travellers, but they're like home: whining, sulking, whining, throwing tantrums, screaming, moving, won't listen or doing the opposite. In short, they are normal children, full of life, too full of energy, envy and opinion," she shared on Instagram.

"But we were all prepared, we knew what we were getting ourselves into. A journey is not just a collection of magical moments, it's an adventure with ups and downs, challenges and difficult moments. Every magical moment is worth it!"

The parents also share the difficult reality of having to explain the condition to their young children.

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"Laurent just asked the question that hurts: 'What does it mean to be blind?'," Lemay captioned one recent post. "I knew it was coming, but you're never really ready, even if it's the third time."

"Why can't we heal? How I drive a car? How will I cross the street? Will my wife be blind? Following his questions, finding answers, solutions as if they were obvious. Seeing him slowly lose his innocence and, from the age of five, realizing the extent of the challenges that await him," she shared.?

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