A family on a world tour before the children lose their sight


This Canadian family of six is ​​in a hurry to collect visual memories of the world as three of their four children gradually lose their sight due to a rare genetic disease.

Laurent’s fifth birthday celebrations started quite early.

Awoken by his parents in the middle of the night, he soon found himself outside in complete darkness walking towards a field.

Laurent and his family were about to witness a scene that holds a place in the bucket lists of millions: the hot air balloons of Cappadocia, Türkiye. And within minutes, the field comes alive with dozens of bright orange flames lighting up in the sky.

Although their parents told them they couldn’t afford a race, Laurent and his siblings were in for a surprise.

So when their mother said, “OK, let’s come in,” they turned to her wide eyes and asked, “What? We can?”

The balloon rose into the air with the rising sun. “It was so magical that it looked like a dream”, says his mother Edith Lemay World TRT.

This experience would become the most memorable moment of the family’s travels, which they embarked on with one goal: to collect visual memories before Laurent, Colin, 7, and Mia, 12, lost their sight completely.

The Lemays regularly post updates and photos of their travels on their Facebook and Instagram accounts under the name Plein Leurs Yeux, like this one from <a class=Cappadocia.” class=”content-image lazy preview” bad-src=”https://cdni0.trtworld.com/w32/q50/140724_kapadokya_1663940969239.jpeg” src=”https://cdni0.trtworld.com/w960/q75/140724_kapadokya_1663940969239.jpeg”/>

The Lemays regularly post updates and photos of their travels on their Facebook and Instagram accounts under the name Plein Leurs Yeux, like this one from Cappadocia. (Facebook/PleinLeursYeux)

“Images to consult”

It all started in the early 2010s when Lemay and her husband Sébastien Pelletier noticed that their then very young daughter Mia was bumping into walls and furniture while walking in the dark.

She also neglected the toys her parents tried to give her in the dark, as if she couldn’t see them.

In 2018, after years of doctor visits, Mia was diagnosed with retinitis pigmentosa, a rare genetic eye disease that affected one in 4,000 people worldwide.

So, a year later, the family was hit with what they least expected when their youngest children, Colin and Laurent, were also diagnosed with the same disease. Leo, now 9, was unaffected.

The disease causes progressive deterioration of sight which usually leads to complete vision loss in middle age. In its early stages, patients experience only a narrowing of the field of vision.

There is currently no treatment available and its progression is not predictable.

“One day they’ll be able to drive their car, and maybe the next day their vision will diminish and they won’t be able to,” Lemay says. “It will be a constant struggle throughout their lives.”

The uncertainty surrounding the progression of the disease and the fact that the children would eventually lose their sight led the family to live in the moment and spring into action before the colors faded.

“We wanted to show them the beauty of their world before they can (see) it anymore, so they have beautiful images to refer to when they eventually go blind,” adds Lemay.

“Travelling with 4 children is like traveling with a mini hurricane,” Lemay wrote on social media. From left to right: Laurent, Mia, Leo and Colin, enjoying the sugar cane in the small village of Matema in southern Tanzania. (Facebook/PleinLeursYeux)

The Odyssey

The family began their odyssey in late March, beginning their journey from Namibia. They camped all over the country, scaled the rocks of the Giant’s Playground, and wandered the sand-filled ghost town of Kolmanskop.

At the red dunes of Sossusvlei, the family witnessed a beautiful sunrise in vibrant hues of red and orange – although Mia, Colin and Laurent had to look away due to their sensitivity to strong light.

They spent five weeks in Namibia, then crossed from West to East Africa overland, passing through Zambia, where the children had the chance to zipline at Victoria Falls. After about 10 days there and a 16 hour bus ride, the family arrived in Tanzania.

More adventure awaited the family there. Among their experiences were a safari in the Serengeti and a green trip at the foot of Mount Kilimanjaro.

After three months in Africa, the family left for Turkey. It was yet another eventful trip, and Laurent’s magical birthday in Cappadocia was just one highlight.

The family also visited the ruins of Ani in Kars, immersed themselves in the crystal clear waters of the cotton-white Pamukkale, trekked through the ancient cities of Hierapolis and Ephesus, and ended their trip in Istanbul where she visited Topkapi Palace, Ayasofya Grand Mosque, Blue Mosque, Galata Bridge and Istanbul Strait.

“We will miss the baklava, chicken doner and Turkish coffee,” Lemay wrote on social media as they left the country, en route to Mongolia.

On their trip to Mongolia, the family spent 34 nights in a yurt. They participated in the annual Naadam festival and attended horse racing, archery and wrestling competitions.

One of the items on Laurent’s wish list, drinking juice on a camel, was barred in the dunes of the Gobi Desert. The children even got to ride reindeer during their visit to Hatgal, where they met the Tsaatan, reindeer herders.

The family is currently in Bali, Indonesia, and have been on an odyssey for over 180 days. They plan to stay there for about two months to explore the rest of the country’s islands.

Their parents try to continue the education of the children while they travel, with some books they have acquired from their school.

Their parents try to continue the education of the children while they travel, with some books they have acquired from their school. (Facebook/PleinLeursYeux)

Building Resilience

At one point in their journey, without warning, Laurent asked, “What does it mean to be blind?” Lemay wrote on social media.

“Why can’t we heal? How am I going to drive a car? How will I cross the street? the questions continued.

She struggled to answer and her heart sank, Lemay recalled, even though it was the third time she had to have this conversation and she knew it was going to happen.

Mia, Colin and Laurent would constantly have to “readjust to their new reality” as their vision deteriorates over time, also recognizing that one day the lights might go out.

It requires resilience, which Lemay and her partner hope to teach their children on their travels.

Traveling, while fun and exciting, can also be tiring, uncomfortable and frustrating. Anything can go wrong. Lemay wants children to learn that if a problem arises and they focus on the problem, and they start complaining, it won’t help them.

“I don’t want them to feel like their whole life that they’re a victim and they’re unlucky to have this condition, you know? Yes it’s sad. But when you look around and you go to other countries and you see people who don’t have running water, that children can’t go to school, you realize that in the together, their life is pretty amazing,” says Lemay.

“They are very, very lucky in life, very lucky. And I really want them to watch that in their life. Not small things that don’t work.

During their trip to Africa, the family saw wildlife ranging from cheetahs, rhinos, giraffes, elephants to penguins.

During their trip to Africa, the family saw wildlife ranging from cheetahs, rhinos, giraffes, elephants to penguins. (Facebook/PleinLeursYeux)

Source: World TRT

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