Parents Take Their 4 Kids on Year-Long World Tour Before 3 Lose Their Vision From Rare Genetic Disease
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The parents of four children under 12—three of whom are diagnosed with a rare genetic disorder that could leave them blind in the future—have embarked on a year-long, round-the-world tour to fill their children’s minds with rich visual memories.
Montreal-based couple Edith Lemay and Sebastien Pelletier noticed that their eldest daughter, Mia, began showing signs of vision problems when she was just 3 years old. A few years later, she was diagnosed with retinitis pigmentosa, a condition that causes a loss of vision over time and for which there’s no cure. In 2019, Mia’s two youngest brothers, Colin and Laurent, were diagnosed with the same rare genetic disorder.
Mia’s specialist suggested to the parents that they focus on creating visual memories.
“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, and I’m going to fill her visual memory with the best, most beautiful images I can,” Edith said in an interview with CNN.
Sebastien added: “With the diagnosis, we have an urgency. There’s great things to do at home, but there’s nothing better than traveling… Not only the scenery but also the different cultures and people.”
The couple received a boost to their travel funds when the financial company Sebastien worked for and had shares in was sold. Waylaid by the pandemic, they abandoned their carefully created itinerary and finally left home in March 2022, armed only with a bucket list, including “horseback riding” for Mia and “drinking juice on a camel” for Laurent.
They plan to return to Quebec in March 2023.
Besides sightseeing, Edith and Sebastien, who’ve been married for 12 years, want their kids to soak up the amazing flora and fauna of the countries they visit. So far, they have seen Namibia, Zambia, Tanzania, Turkey, and Mongolia. At the time of writing, the family of six have reached Indonesia.
Edith and Sebastien expect that Mia, 12, Colin, 7, and Laurent, 5, will be completely blind by the time they’re middle-aged. The siblings’ brother Leo, 9, does not have the same disease.
According to Edith, Mia knew about her condition when she was just 7 years old, but her siblings have only recently found out about their condition and have thus begun to ask some difficult questions.
“My little one asked me, ‘Mommy, what does it mean to be blind? Am I going to drive a car?’” Edith said. “Slowly, he’s understanding what’s happening. It was a normal conversation for him. But for me, it was heart-wrenching.”
Despite the uncertainty of their future, the family are making the most of their epic adventure and life on the road. Sebastien and Edith, who works in healthcare logistics, are homeschooling their kids as they travel and are noticing that the close proximity is bringing their kids together.
Sebastien said: “I think it helps solidify that link between them, and hopefully that will continue in the future so that they can support each other.”
“We never know what’s going to impress them,” Edith said. “We will tell ourselves [they will think] something is wonderful, and then they see puppies in the street and it’s the best thing in their life.
They’re super curious … they easily adapt to new countries and new food. I’m very impressed with them.”
Besides providing new experiences and unforgettable visual stimuli, the trip, Edith and Sebastien hope, will help the children learn vital coping skills. They also hope that the time spent in different countries and among different cultures will teach them to be grateful for what they have.
Edith said: “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 colorful books.”
The family have been sharing updates about their trip on their Facebook and Instagram pages. In doing so, they’ve connected with other families who’re also dealing with diagnoses of retinitis pigmentosa.
A teacher at a school for visually impaired children in Quebec has made a particular impact on Edith.
“Every week, she opens the Facebook page and describes all the pictures, or reads whatever I’m writing,” she explained. “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, [one] that I’m really grateful for.”
Edith and Sebastien remain hopeful that science will find a solution before retinitis pigmentosa takes Mia, Colin, and Laurent’s eyesight. In the meantime, they want to make sure their kids enjoy the little things and are strong enough to face whatever life throws their way.
Sebastien said: “This trip has opened our eyes to a lot of other things, and we really want to enjoy what we have and the people that are around us. If that can continue when we go back, even in our daily routines, it will be a really good accomplishment.”
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