Alexandra Ferguson

(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 their four children, was first taken to a specialist, she was diagnosed with retinitis pigmentosa, a rare genetic condition that causes vision loss or reduction over time. time.

Lemay and Pelletier, married for 12 years, then noticed that two other of their 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 condition; his other son Leo, now nine, was given the green light.

“In reality, there is nothing you can do,” says Lemay, explaining that there is currently no cure or effective 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 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

Accepting the news, the couple focused on helping their children learn 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 truly amazing way to do it 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 possible.”

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

Even though Lemay and Pelletier traveled a lot together before becoming parents and took their children on several occasions, taking a long family trip didn’t seem like an option until now.

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

“Not only the landscape, but also the different cultures and peoples. »

They soon began trying to accumulate savings, and their travel boat received a welcome boost when the company Pelletier worked for was acquired and held stock for which he received compensation.

“It was like a little gift of life,” admits Lemay, who works in health logistics. “It was like, ‘Here’s the money for your trip.’ »

Originally scheduled to leave in July 2020, the family of six had planned a long itinerary that included a trip through Russia overland, as well as 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 caused by the global pandemic, and they revised their itinerary time and time again. When they finally left Montreal in March 2022, they had few plans.

“We actually left without an 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 drew up 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 special 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 left for Mongolia, before settling in Indonesia.

“We focused on views,” says Pelletier. “We also focused a lot on fauna and flora. We have seen amazing animals in Africa, but also in Türkiye 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 being able to take in the beautiful scenery while their eyesight is still relatively strong, the couple hope the trip will help the children develop strong coping skills.

According to the National Eye Institute, 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 end up by losing most of their sight.

“They are going to have to show great resilience throughout their lives,” adds Lemay, pointing out that Mia, Colin and Laurent will have to constantly readjust as their eyesight deteriorates.

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support system

The couple’s son, Leo, while visiting the family in Cappadocia, Turkey. Credit: Edith Lemay

“Travelling is something you can learn from. It’s cute and fun, but it can also be very difficult. You may be uncomfortable. You may be tired. There is frustration. So there are a lot of things that can be learned from the trip itself. »

While Mia, now 12, has known about her illness since she was seven, Colin and Laurent discovered it more recently and are starting 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?” asks 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 siblings’ genetic condition was “always a no-brainer”.

Lemay and Pelletier hope that being able to spend time in different countries and experience different cultures shows all children how lucky they are, despite the challenges that may arise later in life as their eyesight improves. deteriorated.

“No matter how hard their life will be, I wanted to show them that they are lucky to have running water at home and to go to school every day with pretty colorful books,” adds Lemay, who says the four children are happy. adapted to life on the road with relative ease.

“They are 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 the trip 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. we say that [pensarán] that something is wonderful and then they see puppies on the street and it’s the best of their lives”.

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

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

In fact, a teacher at a special school in Quebec for blind or visually impaired students is one of her 11,000 Facebook subscribers and often 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. To be able to share this with other people is a very beautiful gift for which I am very grateful. 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 that the diagnosis is still on their minds, but they are focused on the present moment and “focus their energy on the positive things.”

“You never know when it can start or how fast it can go,” adds Pelletier. “So we really want to take advantage of this family time and take care of each of our children so that we can have this experience to the fullest.”

Although the family plans to return to Quebec next March, they say they try not to think that far ahead. In fact, the ability to be in the moment is one of the key things the family has learned over the past few months.

“This trip has opened our eyes to many other things and we really want to enjoy what we have and the people around us,” explains Pelletier.

“If this can continue when we return, even in our daily routine, it will be a very great 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 kids grow stronger.

“They go very well together,” he adds. “Above all, I think it helps solidify that bond between them. And I hope that will continue in the future, so that they can support each other.”

Pelletier points out that they hope Mia, Colin and Laurent never go blind. But for now, they’re doing everything they can to make sure they can handle whatever the future throws at them.

“I hope science will find a solution,” says Pelletier. “Fingers crossed for that. But we know it can happen, which is why we want to make sure our children are equipped to meet these challenges. »

Editor’s Note: This article was originally published on September 12, 2022.

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