(CNN) — Their daughter Mia was only three years old when Canadian couple Edith Lemay and Sébastien Pelletier first noticed she had problems with her eyesight.
A few years after Mia, the eldest of their four children, was first taken to a specialist, she was diagnosed with retinitis pigmentosa, a rare genetic disease that causes loss or reduction of vision over time.
By then, Lemay and Pelletier, who have been married for 12 years, had noticed that two other of their children, Colin, now seven, and Laurent, five, were experiencing 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 years old, got the nod.
“There’s really nothing you can do,” says Lemay, explaining that there’s currently no effective cure or treatment to slow the progression of retinitis pigmentosa.
“We don’t know how fast it will go, but we predict that they will go completely blind by middle age.”
Accepting the news, the couple turned their attention to helping their children acquire the skills they would need to get by in life.
When Mia’s specialist suggested wrapping her in “visual memories,” 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 with their children for a year.
Although Lemay and Pelletier often traveled together before they became parents, and had taken their children with them several times, a long family trip had not seemed 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 nothing beats traveling.”
“Not only the landscape, but also the different cultures and people.”
They soon began trying to build up savings and their travel boat got a welcome boost when the company Pelletier worked for was acquired and had stock for which he received compensation.
“It was like a little gift from life,” admits Lemay, who works in healthcare logistics. “It was like, ‘Here’s the money for your trip.'”
The family was originally set to leave in July 2020, but the family of six had an extensive itinerary planned, including traveling overland across Russia and spending time in China.
A great adventure
However, they had 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 went without an itinerary,” says Lemay. “We had ideas about where we wanted to go, but we planned as we went. Maybe a month in advance.”
Before their departure, the Lemay-Pelletier family made a 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 to Turkey where they spent a month. The family then set sail for Mongolia, before moving on to Indonesia.
“We focused on the 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 try to show them things they wouldn’t have seen at home and have incredible 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 US National Institutes of Health, an agency of the US Department of Health and Human Services, symptoms of retinitis pigmentosa usually begin in childhood and most people eventually lose most of their vision.
“They’re going to have to be very resilient throughout their lives,” Lemay adds, pointing out that Mia, Colin and Laurent will have to continually adapt as their eyesight deteriorates.
“Traveling 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 by myself.”
While Mia, now 12, has known about her illness since she was seven, Colin and Laurent found out more recently and are starting to ask some tough questions.
“My little boy asked me, ‘Mommy, what does it mean to be blind? Am I going to drive?'” says Lemay. “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 siblings’ genetic makeup was “always a given.”
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 difficult as their lives will be, I wanted to show them that they are happy to have running water at home and go to school every day with beautiful colored books,” adds Lemay, who says the four children they have relatively easily adapted to life on the road.
“They’re super curious,” he says. “They adapt easily to new countries and new foods. I am very impressed with them.”
While visual experiences remain a priority, Lemay says the journey has become more about showing kids “something different” and giving them unforgettable experiences.
“There are beautiful places all over the world, so it really doesn’t matter where we go,” he explains.
“And we never know what will impress them. We tell ourselves that [pensarán] something is great and then they see puppies on the street and it’s the best of their lives”.
Lemay says other people who have been diagnosed or have a loved one with retinitis pigmentosa have reached out to encourage her.
In fact, a teacher at a specialized school in Quebec for blind or visually impaired students is one of her 11,000 Facebook followers and often shares her adventures with her class.
“Each week, open the Facebook page and describe all the photos or read what I write,” says Lemay.
“And in a way they are part of the journey with us. To be able to share this with other people is a very nice gift that I am very grateful for. It makes me very happy.”
Lemay and Pelletier admit that the diagnosis is always in their heads, but they are focused on living in the moment and “directing their energy towards the positives.”
“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 kids so we can live this experience to the fullest.”
Although the family plans to return to Quebec in March, they say they are trying not to think so 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 will be a very nice achievement.”
Although 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 is seeing the bond between the children grow stronger.
“They’re really good together,” he adds. “Mostly I think it helps to strengthen that bond between them. And I hope it stays that way in the future so they can support each other.”
Pelletier emphasizes that they hope 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 brings.
“Hopefully science will find a solution,” says Pelletier. “Fingers crossed for that. But we know it can happen, so we want to make sure our kids are equipped to deal with these challenges.”
Editor’s Note: This article was originally published Sept. 12.