Parents travel around the world with their children before they lose their sight

(CNN) – Their daughter Mia was only 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 a specialist, Mia, the eldest of their four children, was diagnosed with retinitis pigmentosa, a rare genetic condition that causes vision loss or decline over time.

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

Their fears were confirmed when the boys were diagnosed with the same genetic disease in 2019; their other son Leo, now nine, was given the green light.

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

“We don’t know how fast it will go, 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.

Edith Lemay

Once they got to grips with the news, the couple focused their attention on helping their children develop the skills they needed to orient themselves in life.

When Mia’s specialist suggested absorbing her with “visual memories,” Lemay realized that there was a truly amazing way they could do just that for her and the rest of the children.

“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 she will fill her visual memory with the best and most beautiful images I can.”

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

While Lemay and Pelletier often traveled together before becoming parents and had taken their children on various trips, taking a long trip as a family hadn’t seemed feasible before.

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

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

They soon began trying to accumulate their savings, and their travel fund received a welcome boost when the company Pelletier worked for and in which he had shares was bought.

“It was like a little gift from life,” admits Lemay, who works in health logistics. “Like, here’s the money for your trip.”

The family of six was originally supposed to leave in July 2020 and had a thorough itinerary planned that included traveling across Russia by land and spending time in China.

Great adventure

The Lemay-Pelletier family explores the Quivertree forest in Namibia, where they began their journey around the world.

The Lemay-Pelletier family explores the Quivertree forest in Namibia, where they began their journey around the world.

Edith Lemay

However, they have been forced to delay travel for a few years due to travel restrictions caused by the global pandemic and have revised their itinerary countless times. When they finally left Montreal in March 2022, they had few plans in place.

“We actually left without an itinerary,” says Lemay. “We had ideas about where we wanted to go, but let’s plan as we go. Maybe a month earlier.”

Before leaving, the Lemay-Pelletier family created 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.

“At the time it was very specific and a lot of fun,” he adds.

They began their journey in Namibia, where they got close to elephants, zebras and giraffes, before heading to Zambia and then Tanzania, before flying to Turkey, where they spent a month. The family then traveled to Mongolia before moving to Indonesia.

“We are focusing on the sights,” explains Pelletier. “We are also focusing a lot on the fauna and flora. We have seen incredible animals in Africa, but also in Turkey and elsewhere.

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

In addition to witnessing wonderful views 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 United States Department of Health and Human Services, symptoms of retinitis pigmentosa usually begin in childhood, and most people eventually lose. most of the view.

“They will need to be truly resilient throughout their lives,” adds Lemay, noting that Mia, Colin and Laurent will have to constantly readjust as their vision deteriorates.

Support system

The couple's son, Leo, during the family's visit to Cappadocia, Turkey.

The couple’s son, Leo, during the family’s visit to Cappadocia, Turkey.

Edith Lemay

“Traveling is something you can learn from. It’s beautiful and fun, but it can also be really difficult. You can feel uncomfortable. You can be tired. There is frustration. So you can learn a lot from the journey itself.”

While Mia, now 12, has been aware of her condition since she was seven, Colin and Laurent have found out more recently and are starting to ask tough questions.

“My little one asked me, ‘Mom, what does it mean to be blind? Will I drive a car?'” Lemay says. “He’s five. But slowly, he’s figuring out what’s going on. It was a normal conversation for him. But for me, it was heartbreaking.”

For Leo, their second eldest son, knowledge of his siblings’ genetic condition was “always a fact”.

Lemay and Pelletier hope that spending time in different countries and experiencing different cultures will show all children how lucky they are, despite the challenges that may arise later in their life when their sight deteriorates.

“No matter how hard their life is, I wanted to show them that they are lucky only to have running water in the house and to be able to go to school every day with nice colorful books,” adds Lemay, who says everyone and four children adapted to life on the road with relative ease.

“They’re super curious,” he says. “They adapt easily to new countries and new food. I’m very impressed with them.”

While visual experiences remain a priority, Lemay says travel has become more than showing children “something different” and providing them with unforgettable experiences.

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

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

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

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

In fact, a teacher at a Quebec specialty school for blind or visually impaired students is among her 11,000 Facebook followers and often tells her class about their adventures.

“Every week, he opens the Facebook page and describes all the pictures or reads what I’m writing,” Lemay says.

“And somehow they are part of the journey with us. To be able to share this with other people is a really nice gift that I’m really grateful for. That makes me really happy.”

Future challenges

Lemay and Pelletier say the trip strengthened the bond between their four children, seen here in Mongolia.

Lemay and Pelletier say the trip strengthened the bond between their four children, seen here in Mongolia.

Edith Lemay

Lemay and Pelletier admit that the diagnosis is always in the back of their mind, but they are focused on living in the moment and “putting their energy into the positive”.

“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 satisfy each of our children in order to have this experience to the fullest.”

While the family plans to return home to Quebec next March, they say they are trying not to think so far. In fact, the ability to live in the moment is one of the fundamental things the family has learned in recent months.

“This journey has opened our eyes to 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 go back, even in our daily routine, it will be a really good result.”

While traveling as a family was a test – the couple also studied their children at home on the go – Lemay and Pelletier say one of the highlights was the strengthening of the bond between the children.

“They look great together,” he adds. “Also, I think it helps to solidify that bond between them. And I hope that continues in the future, so that they can support each other.”

Pelletier points out that they remain confident that Mia, Colin and Laurent may never go blind. But for now, they’re doing everything they can to make sure they can handle whatever the future holds.

“We hope science finds a solution,” says Pelletier. “We cross our fingers for it. But we know it could happen, so we want to make sure our kids are equipped to face these challenges.”

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