(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 eldest of her four children, was first taken to a specialist, she was diagnosed with retinitis pigmentosa, a rare genetic condition that causes loss or decrease in vision over time. time.

By then Lemay and Pelletier, who had 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, has been 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 this will progress, but we expect them to go completely blind in middle age.”

visual memories

Once they accepted the news, the couple focused on helping their children learn the skills they would need to get on in life.

When Mia’s specialist suggested they wrap her in “visual keepsakes,” Lemay realized there was a truly amazing way to do just that for her and the rest of the kids.

“I said to myself, ‘I’m not going to show him an elephant in a book, I’m going to take him to see a real elephant,'” he explains. “And I will fill your visual memory with the best and most beautiful images that I can.”

She and her husband soon began planning to spend a year traveling the world with their children.

Although Lemay and Pelletier traveled frequently together before becoming parents and took their children on several trips, taking a long family trip seemed out of the question until now.

“With the diagnosis, we have an emergency,” adds Pelletier, who works in finance. “There are great things to do at home, but there’s nothing better than traveling.”

“Not just the landscape, but also the different cultures and people.”

They soon attempt to accumulate savings, and their traveling boat receives a welcome boost when the company Pelletier works for is acquired and he owns stock for which he is compensated.

“It was like a little gift of life,” says 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 a long itinerary that included a trip through Russia overland and a stay in China.

A great adventure

The Lemay-Pelletier family explores the Quivertree Forest in Namibia, where their journey around the world began. Credit: Edith Lemay

However, they were forced to delay their trip for years due to travel restrictions imposed 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 an itinerary,” says Lemay. “We had an idea 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 to Turkey, where they spent a month . The family then headed to Mongolia, before moving on to Indonesia.

“We focused on the views,” says Pelletier. “We also focused a lot on the fauna and flora. We saw incredible animals in Africa, but also in Turkey and elsewhere.

“So we’re trying to get them to see things they wouldn’t have seen at home and to have amazing experiences.”

Along with witnessing beautiful sights while their vision is still relatively strong, the couple hope the trip will help the children develop strong coping skills.

According to national eye institutewhich is part 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 view.

“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 deteriorates.

support system

The couple’s son, Leo, while visiting the family in 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 difficult. You can be uncomfortable. You can be tired. There’s frustration. So you can learn a lot from the journey itself.”

While Mia, now 12, has known about her illness since she was seven, Colin and Laurent discovered it more recently and are beginning to ask themselves some tough questions.

“My little boy asked me, ‘Mom, what does it mean to be blind? Am I going to drive a car?’ “says Lemay. “He’s five years old. But little by little he understands what’s going on. It was a normal conversation for him. But for me, it was heartbreaking.”

For Leo, his second eldest son, knowing his brothers’ genetic condition 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 pretty colorful 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 foods. I’m very impressed with them.”

While visual experiences remain a priority, Lemay says travel is more about showing kids “something different” and giving them unforgettable experiences.

“There are beautiful places all over the world, so it doesn’t matter where we go,” he explains.

“And you never know what will impress them. [pensarán] that something is wonderful and then they see puppies on the street and it’s the best thing of their life.

The family shared their journey on social media, posting regular updates to their Facebook accounts. Facebook and instagram.

Lemay says other people who have been diagnosed or have a loved one with retinitis pigmentosa have reached out to her with words of encouragement.

Indeed, a teacher at a special school in Quebec for blind or visually impaired students is one of her 11,000 Facebook subscribers and regularly shares her adventures with her class.

“Every 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. Being able to share that 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 has strengthened the bond between their four children, seen here in Mongolia. Credit: Edith Lemay

Lemay and Pelletier admit the diagnosis is still 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 enjoy this time as a family and take care of each of our children so that we can live this experience to the fullest.”

Although the family plans to return to Quebec next March, they say they try not to think too much about the future. 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 this can continue when we return, even in our daily routines, it will be a very nice achievement.”

Although traveling as a family was not easy, the couple also homeschooled their children during the trip, Lemay and Pelletier say one of the highlights was seeing the bond between the children grow stronger.

“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 they can support each other.”

Pelletier points out 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.

“Let’s hope science finds a solution,” says Pelletier. “We have our fingers crossed for that. But we know it can happen, so we want to make sure our kids are equipped to meet those challenges.”