This Canadian family of six are in an urgency to collect visual memories of the world as three of their four kids are gradually losing their vision due to a rare genetic disease.
Laurent’s fifth birthday celebrations began quite early.
Woken up by his parents in the middle of the night, he soon found himself outside in pitch black 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 in the next few minutes, the field comes alive with dozens of bright orange flames lighting up in the sky.
Though their parents had told them they could not afford a ride, Laurent and his siblings were in for a surprise.
So, when their mother said “Okay, let's go in,” they turned to her wide eyed and asked: “What? We can?”
The balloon rose into the air along with the emerging sun. “It was so magical that it looked like a dream,” his mother Edith Lemay tells TRT World.
That experience would become the most memorable moment from the family’s travels, which they set out for with one goal: collecting visual memories before Laurent, 7-year-old Colin and 12-year-old Mia completely lose their vision.
“Images to refer to”
It all started in the early 2010s when Lemay and her partner Sebastien Pelletier noticed that their daughter Mia, then a toddler, would run into walls and furniture when walking in the dark.
She would also overlook toys that her parents would try to hand her in the dark, as if she couldn’t see.
In 2018, after years of visits to doctors, Mia was diagnosed with retinitis pigmentosa, a rare genetic eye disease that affects one in 4,000 people worldwide.
So, a year later, the family was struck by what they least expected when their youngest kids, Colin and Laurent, were also diagnosed with the same disease. Leo, now 9-years-old, was not affected.
The disease causes a gradual deterioration of sight that typically leads up to complete vision loss in the middle age. In its early stages, patients only experience a narrowing 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 is going to diminish and they're not going to be able to do it,” Lemay says. “It's going to be a constant struggle all through their lives.”
The uncertainty surrounding the advance of the disease, and the fact that the kids would eventually lose their vision, led the family into a philosophy of living in the moment and to spring into action before the colours fade.
“We wanted to show them the beauty of their world before they're not able to do (see) it anymore, so they'll have nice images to refer to when they eventually go blind,” Lemay adds.
The odyssey
The family began their odyssey in late March, starting their journey from Namibia. They camped around the country, climbed the boulders of the Giant's Playground, and walked around the sand filled ghost town of Kolmanskop.
At the red dunes of Sossusvlei, the family witnessed a magnificent sunrise of vibrant red and orange hues - though Mia, Colin and Laurent had to look away due to their sensitivity to strong light.
They spent five weeks in Namibia, then crossed Africa from West to East by land, passing through Zambia, where the kids had the chance to zipline at the Victoria Falls. After around 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 at the Serengeti, and a green journey to the foot of Mount Kilimanjaro.
After three months in Africa, the family set out for Türkiye. It was yet another eventful trip, and Laurent’s magical birthday at Cappadocia was only one highlight.
The family also visited the ruins of Ani in Kars, dipped in the crystal blue waters of the cotton-white Pamukkale, roamed the ancient cities of Hierapolis and Ephesus, and finished their trip in Istanbul where they visited the Topkapi Palace, Ayasofya Grand Mosque, the Blue Mosque, the Galata Bridge and the Istanbul Strait.
“We will miss baklava, chicken doner and Turkish coffee,” Lemay wrote on social media as they were leaving the country, en route to Mongolia.
During their Mongolia trip, the family spent 34 nights in a yurt. They joined the annual Naadam festival and watched horse racing, archery and wrestling competitions.
One of Laurent’s bucket list items, drinking juice on a camel, was crossed off at the dunes of the Gobi Desert. The kids even got to ride reindeers when they visited Hatgal, where they met the Tsaatan people who are reindeer herders.
The family is currently in Bali, Indonesia, and have been on their odyssey for over 180 days. They are planning to stay there for about two months to explore the rest of the country’s islands.
Building resilience
At some point of their journey, without warning, Laurent asked: "What does it mean to be blind?" Lemay wrote on social media.
“Why can't we heal? How will I drive a car? How will I cross the street?” the questions continued.
She struggled in answering and her heart sank, Lemay recalls, even if it was the third time she had to have that talk and knew it was coming.
Mia, Colin and Laurent would constantly have to “readjust to their new reality” as their vision deteriorates over time, acknowledging also that someday the lights might go out.
That requires resilience, which Lemay and her partner are hoping to teach their kids through their travels.
Travelling, as much as it can be fun and exciting, can also be tiring, uncomfortable, and frustrating. Anything can go wrong. Lemay wants the children to learn that if a problem arises and their focus is on the problem, and they start complaining, it won’t help.
“I don't want them to, all their life, feel that they're a victim and that they're so unlucky to have that condition, you know? Yes, it's sad. But when you look around and when you go to other countries and you see people that don't have running water, that kids can't go to school, you realise that overall, their life is pretty amazing,” Lemay says.
“They're very, very fortunate in life, very lucky. And I really want them to look at that in their life. Not at little things that aren’t working.”
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(With input from news agency language)
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