Edith Lemay and Sebastien Pelletier have been married for 12 years and have four children. Three of them, Mia, Colin and Laurent, have a genetic eye disease called retinitis pigmentosa. The disease causes children to have reduced vision and eventually lose their sight permanently. Leo, their second son, now 9 years old, is luckier because he does not have the disease.
"There's really nothing you can do for them. Doctors say there's no cure, and no effective treatment to slow the progression. We don't know how fast it will progress, but it's possible they'll lose their vision permanently by middle age," Lemay said.
The family took their three children on a trip around the world.
Mia's doctor suggested that her parents help her use her "visual memory," the way her brain remembers everything it sees. Following the doctor's advice, Lemay said: "I won't show the kids pictures of elephants in books. I'll take them to see real elephants. And I'll fill their visual memory with the most beautiful images I can." And that's when they planned to spend a year traveling around the world with their kids.
Luckily, Pelletier, who works in finance, had her company sponsor her trip. They also had savings. “It was like a gift from life,” they said. The family of six had originally planned to leave in July 2020, but they only started traveling in March because of Covid-19.
The family made a list of things they wanted to do and places they wanted to go before leaving. Mia loved horseback riding, Laurent wanted to drink fruit juice while riding a camel... Leaving Montreal (Canada), they went to Zambia, Tanzania and spent a month in Türkiye. Then they went to Mongolia and Indonesia. "We tried to let the children see things they had never seen before in Canada, and to give them the most memorable experiences."
In addition to seeing the beautiful scenery, the couple hopes the trip will help their children develop better life skills and be stronger than many others. Lemay explains that their children "need to be really resilient throughout their lives" because one day, they will no longer be able to see. "Traveling is a life lesson, it feels great, it's fun, but it's also difficult. You can be uncomfortable, tired or frustrated. So you can learn a lot from the trips themselves," Lemay says.
The children had many good memories with their family.
Lemay and Pelletier hope that traveling the world and experiencing different cultures will make the children see how fortunate they are, despite the challenges of losing their sight later in life.
After 6 months of traveling, the children adapted to life, new countries, new foods very easily. They also do not know which place will impress the children the most, because every place in the world is beautiful. "We do not care about which places to go to enjoy the most beautiful scenery. Sometimes, seeing dogs running on the road is also the most wonderful thing in the eyes of the children."
The couple also recorded the trip and posted it on their personal page in the hope of giving more motivation and strength to those in the same situation. Lemay said that a teacher at a special school in Quebec often recounted their family's adventures to students who were deaf. "Every week, she would go to my personal page and describe to the students the photos, or what we shared. In a way, they gradually became a part of our trip. Being able to share this with others is really a good gift that makes me happy," Lemay said.
The couple still face challenges moving forward. The loss of their children's sight is always on their minds. Mia, now 12, learned about her condition when she was 7. Colin and Laurent, now 7 and 5, did not. Lately, they have started asking questions that are difficult for the couple to answer: "Mommy, what does it mean to be blind? Can I drive a car?"
The family received financial assistance from many others to help fulfill the dreams of their three children.
When Laurent asked these questions, it was just a normal conversation. But for the couple, it was heartbreaking. As for Leo, the only child without the disease, he was always strongly aware that his siblings' eye condition "was always a fact of life". However, everyone ignored those worries, and "focused on positive things".
The Lemays are planning to return home in March 2023 and are trying to make the most of it. In addition to traveling, the children are still learning remotely. They are taught by their parents on the road. Learning together helps the children bond and continue to help each other in the future.
Lemay and Pelletier still hope their children will never go blind. "Hopefully in the future, science will advance and this disease will be cured," Pelletier said. But regardless, they aim to help equip their children to face any worst-case scenario.
