(CNN) — Their daughter Mia was just three years old when Canadian couple Edith Lemay and Sébastien Pelletier first noticed she had vision problems.
A few years after Mia, the oldest of her four children, was first taken to a specialist, she was diagnosed with retinitis pigmentosa, a rare genetic disease that causes loss or diminution of vision over time.
By this time, Lemay and Pelletier, who have been married for 12 years, had noticed that two of their other children, Colin, now seven, and Laurent, five, had the same symptoms.
Their fears were confirmed when the children were diagnosed with the same genetic condition in 2019; his other son Leo, now nine, was given the green light.
“There’s really nothing you can do,” 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 expect them to go completely blind in middle age.”
visual reminders
Edith Lemay with her husband Sébastian Pelletier and their children Mia, Leo, Colin and Laurent in Ölüdeniz, Turkey. Credit: Edith Lemay
After accepting the news, the couple turned their attention to helping their children acquire the skills they would need in life.
When Mia’s specialist suggested wrapping her in “visual keepsakes,” Lemay realized there was a really great way to do 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 your visual memory with the best and most beautiful images I can.”
She and her husband soon began making plans to travel the world for a year with their children.
Although Lemay and Pelletier often traveled together before becoming parents, taking their children on several trips, a long family trip seemed unfeasible until now.
“With the diagnosis, we have an urgency,” adds Pelletier, who works in finance. “There are fun things to do at home, but nothing is more fun than traveling.”
“Not just the landscape, but also the different cultures and people.”
They soon started collecting savings and their travel boat got a welcome boost when the company Pelletier worked for was acquired and he owned stock for which he was remunerated.
“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 set to leave in July 2020 and had an extensive itinerary planned, including traveling Russia overland and spending time in China.
A great adventure
The Lemay-Pelletier family explores the Quivertree Forest in Namibia, where their world tour began. Credit: Edith Lemay
However, they were forced to postpone their trip for several years due to travel restrictions due to the global pandemic, and have revised their itinerary numerous times. When they finally left Montreal in March 2022, they had few plans.
“We actually left without an itinerary,” Lemay says. “We had ideas about where we wanted to go, but we planned as we went. Maybe a month in advance.”
Before they left, the Lemay-Pelletier family made a sort 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 at the time and a lot of fun,” he adds.
The family started 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 left for Mongolia before moving on to Indonesia.
“We focused on the view,” explains Pelletier. “We also paid a lot of attention to fauna and flora. We have seen amazing animals in Africa, but also in Turkey and other places.
“So we’re trying to show them things they wouldn’t have seen at home and have great experiences.”
In addition to seeing beautiful sights while their vision is still relatively strong, the couple hopes the trip will help the kids develop strong coping skills.
According to him National Eye InstitutePart of the U.S. National Institutes of Health, an agency of the U.S. Department of Health and Human Services, the symptoms of retinitis pigmentosa usually begin in childhood, and most people eventually lose most of their vision.
“They will have to be very resilient throughout their lives,” adds Lemay, noting that Mia, Colin, and Laurent will have to constantly adapt as their eyesight deteriorates.
Support System
The couple’s son, Leo, during a family visit to Cappadocia, Turkey. Credit: Edith Lemay
“Travel is something you can learn from. It’s beautiful and fun, but it can also be very difficult. You can feel uncomfortable. You can be tired. There’s frustration. So there’s a lot you can learn from the journey yourself.”
While Mia, now 12, has known about her illness since she was seven, Colin and Laurent found out more recently and started asking tough questions.
“My little boy asked me, ‘Mommy, what does it mean to be blind? Am I going to drive a car?'” Lemay says. “He is five years old. But little by little he understands what is happening. It was a normal conversation for him. But for me it was heartbreaking.”
For Leo, his second eldest son, knowledge of his brothers’ genetic status was “always a fact.”
Lemay and Pelletier hope that the opportunity 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 eyesight deteriorates.
“As hard as their lives will be, I wanted to show them how lucky they are to have running water in the house and that they can go to school every day with cute colored books,” added Lemay, who says the four children have enjoyed themselves. relatively easily adapted to life on the road.
“They are super curious,” he says. “They adapt easily to new countries and new foods. I’m very impressed with them.”
While visual experiences remain a priority, Lemay says the journey has become more about showing kids “something different” and providing them with memorable experiences.
“There are beautiful places all over the world, so it doesn’t matter where we go,” he explains.
“And we never know what will impress them. We tell ourselves that” [pensarán] that something is great and then they see puppies on the street and that’s the best thing in their lives.
The family has shared their journey via social media and posted regular updates on their Facebook accounts. Facebook and Instagram.
Lemay says others who have been diagnosed with or have a loved one with retinitis pigmentosa have reached out to her with words of encouragement.
In fact, a teacher at a specialist school in Quebec for students who are blind or partially sighted is among his 11,000 Facebook followers and regularly tells her class about her adventures.
“Every week, open the Facebook page and describe all the photos or read what I write,” says Lemay.
“And in a way they are also part of the journey with us. Being able to share this with other people is a very beautiful gift that I am very grateful for. It makes me very happy.”
future challenges
Lemay and Pelletier say the trip strengthened the bond between their four children here in Mongolia. Credit: Edith Lemay
Lemay and Pelletier admit they are always thinking about the diagnosis, but they are focused on living in the moment and “focusing their energies on the positive things.”
“We never know when it might start or how fast it might go,” Pelletier added. “So we really want to take this time as a family and take care of each of our children so we can live this experience to the fullest.”
Although the family plans to return home to Quebec in March, they say they are trying not to think too far ahead. In fact, the ability to live in the moment is one of the most important things the family has learned in recent months.
“This journey 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 come back, even in our daily routines, that’s a really nice achievement.”
While traveling as a family has not been easy, the couple has also homeschooled their children during the trip. Lemay and Pelletier say one of the highlights was seeing the bond between the kids strengthen.
“They are very good together,” he adds. “I think most of all it helps to strengthen that bond between them. And I hope it stays that way in the future, so that they can support each other.”
Pelletier insists 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,” Pelletier says. “We’re keeping our fingers crossed. But we know it can happen, so we want to make sure our kids are equipped to handle these challenges.”
