(CNN) — Their daughter Mia was just three years old when the Canadian couple Edith Lemay and Sébastien Pelletier first noticed that she had vision problems.
A few years after Mia, the oldest of her four children, was first taken to see a specialist, she was diagnosed with retinitis pigmentosa, a rare genetic disease that causes loss or diminution of vision over time.
By then, Lemay and Pelletier, who have been married for 12 years, had noticed that two of their other children, Colin, now seven, and Laurent, five, were experiencing the same symptoms.
Their fears were confirmed when in 2019 the children were diagnosed with the same genetic disorder; his other son Leo, now nine, was given the go-ahead.
“There’s nothing you can do, really,” says Lemay, explaining that there is currently no effective cure or treatment to slow the progression of retinitis pigmentosa.
“We don’t know how fast it will progress, but we do anticipate that they will go completely blind by middle age.”
visual memories
Edith Lemay with her husband Sébastian Pelletier and their children Mia, Leo, Colin and Laurent in Ölüdeniz, Turkey. Credit: Edith Lemay
Once they accepted the news, the couple turned their attention to helping their children gain the skills they would need to get by in life.
When Mia’s specialist suggested that they wrap her in “visual souvenirs,” Lemay realized there was a truly amazing way to do just that for her and the rest of the kids.
“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,'” he explains. “And I’m going to fill her visual memory with the best and most beautiful images that she can.”
She and her husband soon began making plans to spend a year traveling the world with their children.
Although Lemay and Pelletier traveled together frequently before they became parents, and had taken their children on several trips, taking a long family trip didn’t seem feasible until now.
“With the diagnosis, we have an urgency,” adds Pelletier, who works in finance. “There are great things to do at home, but there is nothing better than traveling.”
“Not only the landscape, but also the different cultures and people.”
They soon began trying to accumulate savings, and their travel boat received a welcome boost when the company Pelletier worked for was acquired and he owned shares for which he was compensated.
“It was like a little gift of life,” admits Lemay, who works in healthcare logistics. “It was like, ‘here’s the money for your trip.'”
The family of six was originally due to leave in July 2020, and had planned an extensive itinerary that included traveling through Russia overland, and spending time in China.
A big adventure
The Lemay-Pelletier family explores the Quivertree Forest in Namibia, where their world journey began. Credit: Edith Lemay
However, they were forced to delay their trip for several years due to travel restrictions brought on by the global pandemic, and revised their itinerary countless times. When they finally left Montreal in March 2022, they had few plans.
“We actually left without itinerary,” says Lemay. “We had ideas of where we wanted to go, but we planned as we went. Maybe a month in advance.”
Before leaving, the Lemay-Pelletier family created a kind of list of experiences for their trip. According to Lemay, Mia wanted to ride a horse, while Laurent wanted to drink juice on a camel.
“It was very specific and very fun at the time,” he adds.
The family began their journey in Namibia, where they saw elephants, zebras and giraffes up close, before heading to Zambia and Tanzania, before flying on to Turkey, where they spent a month. The family then headed to Mongolia, before moving on to Indonesia.
“We focused on views,” explains Pelletier. “We also focused a lot on fauna and flora. We saw amazing animals in Africa, but also in Turkey and other places.
“So we’re trying to get them to see things they wouldn’t have seen at home and have some amazing experiences.”
In addition to witnessing beautiful sights while their vision is still relatively strong, the couple hopes the trip will help the children develop strong coping skills.
According to him National Eye Institutewhich is part of the US National Institutes of Health, an agency of the US Department of Health and Human Services, the symptoms of retinitis pigmentosa typically begin in childhood, and most people end up losing most of his sight.
“They’re going to have to be very resilient throughout their lives,” adds Lemay, noting that Mia, Colin and Laurent will have to constantly readjust as their eyesight worsens.
Support system
The couple’s son, Leo, during the family’s visit to Cappadocia, Turkey. Credit: Edith Lemay
“Travel is something you can learn from. It’s beautiful and it’s fun, but it can also be very hard. You can be uncomfortable. You can be tired. There’s frustration. So there’s a lot you can learn from the journey itself.”
While Mia, now 12, has known about her illness since she was seven, Colin and Laurent found out more recently and start asking tough questions.
“My little boy asked me, ‘Mommy, what does it mean to be blind? Am I going to drive a car?'” says Lemay. “He is five years old. But little by little he is understanding what is happening. It was a normal conversation for him. But for me it was heartbreaking.”
For Leo, his second eldest son, the knowledge of the genetic condition of his brothers was “always a fact”.
Lemay and Pelletier hope that being able to spend time in different countries and experience different cultures will show all children how lucky they are, despite the challenges that may arise later in life as their vision deteriorates.
“No matter how hard their life is going to be, I wanted to show them how lucky they are to have running water in their house and to be able to go to school every day with cute colored books,” adds Lemay, who says the four children have adapted to life on the road with relative ease.
“They’re super curious,” he says. “They easily adapt to new countries and new food. I am very impressed with them.”
Although visual experiences remain a priority, Lemay says the trip has become more about showing children “something different” and providing them with unforgettable experiences.
“There are beautiful places all over the world, so it doesn’t really matter where we go,” he explains.
“And we never know what’s going to impress them. We tell ourselves that [pensarán] that something is wonderful and then they see puppies on the street and it’s the best thing in their life.
The family has been recounting their journey through social media, posting regular updates on their Facebook accounts. Facebook e Instagram.
Lemay says that others who have been diagnosed with or have a loved one with retinitis pigmentosa have contacted her with words of encouragement.
In fact, a teacher at a specialized school in Quebec for students who are blind or visually impaired is among his 11,000 Facebook followers and regularly recounts her adventures to her class.
“Each week, open the Facebook page and describe all the photos or read what I’m writing,” says Lemay.
“And in a way they are part of the journey with us. Being able to share this with other people is a very nice gift that I am very grateful for. That makes me very happy.”
future challenges
Lemay and Pelletier say the trip has strengthened the bond between their four children, seen here in Mongolia. Credit: Edith Lemay
Lemay and Pelletier admit that the diagnosis is always on their minds, but they are focused on living in the moment and “focusing their energy on the positive things.”
“We never know when it might start or how fast it might go,” adds Pelletier. “So we really want to take this time as a family and care for each of our children so that we can live this experience to the fullest.”
Although the family plans to return home to Quebec next March, they say they try not to think too far ahead. In fact, the ability to live in the moment is one of the key things the family has learned in recent months.
“This trip has opened our eyes to so many other things, and we really want to enjoy what we have and the people around us,” says Pelletier.
“If that can continue when we get back, even in our daily routines, that will be a really nice achievement.”
Although traveling as a family hasn’t been easy, the couple has also homeschooled their children during the trip, Lemay and Pelletier say one of the highlights has been seeing the bond between the children strengthen.
“They are very good together,” he adds. “Above all, I think it helps solidify that bond between them. And I hope that continues in the future, so that they can support each other.”
Pelletier stresses that they remain hopeful that Mia, Colin and Laurent will never go blind. But for now, they’re doing everything they can to make sure they can handle whatever the future throws at them.
“Hopefully science will find a solution,” says Pelletier. “We keep our fingers crossed for that. But we know it can happen, so we want to make sure our children are equipped to meet these challenges.”