This Canadian family of six is desperate to collect visual memories of the world as three of their four children are gradually losing their sight due to a rare genetic disease.
Laurent’s fifth birthday party started fairly early.
Awakened by his parents in the middle of the night, he soon found himself outside in pitch darkness, walking toward a field.
Laurent and his family were about to witness a scene that will rank in the bucket lists of millions: the hot air balloons of Cappadocia, Türkiye. And over the next few minutes, the field comes alive with dozens of bright orange flames lighting up the sky.
Although their parents had told them they couldn’t afford a ride, Laurent and his siblings were in for a surprise.
When her mom 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 rising sun. “It was so magical it was like a dream,” says his mother Edith Lemay TRT world.
This experience became the most memorable moment of the family’s journeys, which they embarked on with one goal: to collect visual memories before Laurent, 7-year-old Colin and 12-year-old Mia lose their sight completely.
“Pictures for reference”
It all started in the early 2010s when Lemay and her partner Sebastien Pelletier noticed their daughter Mia, then a toddler, running into walls and furniture in the dark.
She also overlooked 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 affects one in 4,000 people worldwide.
A year later, the family was hit by what they least expected when their youngest children, Colin and Laurent, were also diagnosed with the same condition. Leo, now 9 years old, was unaffected.
The disease causes a gradual deterioration in vision, typically leading to complete vision loss in middle age. In the early stages, patients only experience a narrowing field of vision.
There is currently no treatment and its progression is unpredictable.
“One day they’ll be able to drive their car, and the next day maybe their vision will fail and they won’t be able to,” says Lemay. “It will be a constant struggle throughout her life.”
Uncertainty about the progression of the disease and the fact that the children would eventually lose their sight led the family to adopt a philosophy of living in the moment and taking action before the colors fade.
“We wanted to show them the beauty of their world before they can’t (see) it anymore, so they have beautiful images to relate to when they eventually go blind,” adds Lemay.
The family began their odyssey from Namibia at the end of March. They camped across the country, climbed the rocks of the Giant’s Playground, and strolled through the sand-filled ghost town of Kolmanskop.
In the red dunes of Sossusvlei, the family witnessed a glorious sunrise of brilliant reds and oranges – although Mia, Colin and Laurent had to look away because of their sensitivity to strong light.
They spent five weeks in Namibia, then crossed Africa from west to east by land and crossed through Zambia where the children had the opportunity to zip line at Victoria Falls. After about 10 days there and a 16-hour bus ride, the family arrived in Tanzania.
More adventures awaited the family there. Her experiences included a safari in the Serengeti and a green journey to the foot of Kilimanjaro.
After three months in Africa, the family made their way to Türkiye. It was another eventful journey, and Laurent’s magical birthday in Cappadocia was just one highlight.
The family also visited the ruins of Ani in Kars, plunged into the crystal blue waters of cotton-white Pamukkale, roamed the ancient cities of Hierapolis and Ephesus, and ended their journey in Istanbul, where they saw Topkapi Palace, the Ayasofya Grand Mosque, the Blue Mosque, the Galata Bridge and the street of Istanbul.
“We will miss baklava, chicken shawarma and Turkish coffee,” Lemay wrote on social media as they left the country en route to Mongolia.
During their Mongolia trip, the family stayed 34 nights in a yurt. They took part in the annual Naadam festival and watched horse racing, archery and wrestling competitions.
One of Laurent’s wish lists, drinking juice on a camel, was ticked off in the dunes of the Gobi desert. The children were even allowed to ride reindeer when they visited Hatgal, where they met the Tsaatan reindeer herders.
The family is currently in Bali, Indonesia and has been on their odyssey for over 180 days. They plan to stay there for about two months to explore the rest of the country’s islands.
At some point during 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 do I cross the street?” The questions continued.
Struggling to answer, her heart sank, Lemay recalls, even though this was the third time she had had this conversation and knew it was coming.
Mia, Colin and Laurent would constantly have to “adjust to their new reality” as their eyesight deteriorates over time, while also acknowledging that the lights could go out one day.
That requires resilience, which Lemay and her partner hope to instill in their children through their travels.
Traveling, as fun and exciting as it can be, can also be tiring, uncomfortable and frustrating. Everything can go wrong. Lemay wants the kids to learn that when a problem arises, it doesn’t help and they focus on the problem and start complaining.
“I don’t want them to feel like they’re a victim all their lives and be so unlucky to have this condition, you know? Yes, it’s sad. But if you look around and you travel to other countries and you see people who don’t have running water, that kids can’t go to school, you realize that overall their lives are pretty amazing,” says Lemay.
“You are very, very lucky in life, very lucky. And I really want them to look at that in their lives. Not with little things that don’t work.”
Source: TRT World