Canadian family on world tour before kids lose their sight

(CNN) — Their daughter Mia was just three years old when Canadian couple Edith Lemay and Sebastien Pelletier first noticed that she had vision problems.

A few years after they first took her to see a specialist, Mia, the eldest of her four children, was diagnosed with retinitis pigmentosa, a rare genetic condition that causes vision loss or deterioration over time.

By that time, Lemay and Pelletier, who have been married for 12 years, had noticed that two of their sons, Colin, now seven, and Laurent, now five, had the same symptoms.

Their fears were confirmed when the boys were diagnosed with the same genetic disorder in 2019; her other son Leo, now nine, was given the all-clear.

“There’s nothing you can really do,” Lemay says, explaining that there’s currently no cure or effective treatment to slow the progression of retinitis pigmentosa.

“We don’t know how fast it will be, but we expect they will be totally blind by midlife.”

visual memories

After coming to terms with the news, the couple focused on helping their children build the skills they need to navigate their way through life.

When Mia’s specialist suggested captivating her with “visual memories,” Lemay realized there was a truly incredible opportunity 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 a real elephant,'” she explains. “And I will fill their visual memory with the best and most beautiful images I can.”

Soon she and her husband began making plans to travel the world with their children for a year.

While Lemay and Pelletier often traveled together before becoming parents and had taken their children on various trips, long-distance travel as a family had previously seemed unfeasible.

“We have an urgency with the diagnosis,” adds Pelletier, who works in finance. “There are great things to do at home, but there is nothing better than travelling.

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

They soon began to build up their savings and their travel pot received a welcome boost when the company Pelletier worked for and was involved in was bought.

“It was like a little gift of life,” admits Lemay, who works in healthcare logistics. “For example, here is the money for your trip.”

Originally set to leave in July 2020, the family of six had planned a detailed itinerary that included traveling across Russia by land and staying in China.

Big adventure

However, due to the travel restrictions caused by the global pandemic, they have had to postpone their trip for a number of years and have changed their itinerary countless times. When they finally left Montreal in March 2022, they had few plans.

“We actually left with no itinerary,” says Lemay. “We had ideas about where we wanted to go, but we plan as we go. Maybe a month in advance.”

Before setting off, the Lemay-Pelletier family made something of a bucket list of experiences for their trip. According to Lemay, Mia wanted to go horseback riding while Laurent wanted to drink juice on a camel.

“It was very specific at the time and very funny,” she adds.

They started their journey in Namibia, where they got up close and personal with elephants, zebras and giraffes before heading to Zambia and on to Tanzania and then to Turkey where they stayed for a month. The family then made their way to Mongolia before moving on to Indonesia.

“We focus on landmarks,” explains Pelletier. “We also focus a lot on fauna and flora. We have seen incredible animals in Africa but also in Turkey and elsewhere.

“So we’re really trying to get them to see things that they wouldn’t have seen at home and have the most incredible experiences.”

Aside from seeing beautiful sights while their eyesight is still relatively strong, the couple hope the trip will help the children develop strong coping skills.

“They have to be really resilient throughout their lives,” Lemay adds, pointing out that Mia, Colin and Laurent have to constantly readjust as their vision deteriorates.

support system

“Travelling is something you can learn from. It’s beautiful and fun, but it can also be very hard. You may feel uncomfortable. You may be tired. There is frustration.

While Mia, now 12, has known about her condition since she was seven, Colin and Laurent only recently found out and are beginning to ask difficult questions.

“My little one asked me, ‘Mom, what does it mean to be blind? Am I going to drive?’” says Lemay. “He’s five. But slowly he understands what is happening. It was normal conversation for him. But for me it was heartbreaking.”

For Leo, her second eldest child, knowing his siblings’ genetic condition was “always a fact of life.”

Lemay and Pelletier hope that having the opportunity to spend time in different countries and learn about different cultures will show all children how lucky they are, despite the challenges that may arise later in life when their vision deteriorates.

“No matter how hard their life will be, I wanted to show them that they can be happy just having running water in their house and being able to go to school every day with beautiful colorful books,” Lemay adds that all four children are relatively well accustomed to life on the streets.

“They’re super curious,” she 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 is more about showing kids “something different” and giving them memorable experiences.

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

“And we never know what will impress her. We’ll tell each other [they will think] something is wonderful and then they see puppies on the street and it’s the best thing in their life.”

Lemay says others who have themselves been diagnosed or who have a loved one with retinitis pigmentosa have reached out to her for encouragement.

In fact, a teacher at a college for blind or partially sighted students in Quebec is one of her 11,000 Facebook followers and often shares her adventures with her class.

“She opens the Facebook page every week and describes all the pictures or reads what I write,” says Lemay.

“And somehow they are part of the journey with us. Being able to share this with other people is a really nice gift, for which I am very grateful. That makes me very happy.”

future challenges

Lemay and Pelletier admit the diagnosis is always on their minds, but their focus is on living in the moment and “putting their energy into the positive things.”

“We never know when it can start or how fast it can go,” adds Pelletier. “So we really want to take this time as a family and be responsive to each of our children so that we can fully enjoy this experience.”

As the family plans to return to Quebec next March, she says she’s 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 over the past few months.

“This trip opened our eyes to a lot of other things, and we really want to enjoy what we have and the people around us,” says Pelletier.

“If that can continue in our daily routine when we return, that’s a really good achievement.”

Although traveling as a family has been a test — the couple has also homeschooled their children while traveling — Lemay and Pelletier say one of the highlights was the strengthening of the bond between the children.

“They are great together,” he adds. “Beyond that, I think it helps cement that bond between them. And hopefully it will stay that way in the future so that they can support each other.”

Pelletier stresses that they still hope 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 may bring.

“Hopefully science will find a solution,” says Pelletier. “We keep our fingers crossed for that. But we know it could happen, so we want to make sure our kids are equipped to face those challenges.”