Before the parents lose their vision, they travel the world with the children

(CNN) — Canadian couple Edith Lemay and Sébastien Pelletier noticed that their daughter Mia was just three years old.

A few years after they first took her to a specialist, Mia, the oldest of their four children, was diagnosed with retinitis pigmentosa, a rare genetic disease that causes blindness or blindness over time.

At this point, Lemay and Pelletier, who have been married for 12 years, noticed that their two sons, Colin, now seven, and Laurent, now five, were experiencing similar symptoms.

In the year Their fears were confirmed in 2019 when the boys were found to have the same genetic disorder. Their other son Leo, now nine, has been given the all clear.

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

“We don’t know how fast it goes, but we expect them to be completely blind by mid-life.”

Visual memories

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

When Mia’s specialist suggests loving her through “visual memories,” Lemay realizes there’s an amazing way for her and the rest of the kids to do the same.

“I’m not going to show her an elephant in a book, I’m going to take her to see a real elephant,” she says. “And I 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 around the world with their children.

When LeMay and Pelletier traveled together before becoming parents and took their children on various trips, taking long trips as a family never seemed possible before.

“We have an urgency with the investigation,” said Pelletier, who works in finance. “There are great things to do at home, but nothing beats traveling.”

“Not only the scenery, but also the different cultures and peoples.”

They soon began trying to build up their savings, and when the company Pelletier worked for and owned stock in was bought, their travel pot was welcomed.

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

The family of six was originally due to depart in July 2020 and had developed an elaborate itinerary that included traveling overland through Russia and spending time in China.

A big adventure

But due to travel restrictions brought on by the global pandemic, they were forced to delay their journey for several years and rescheduled their itinerary countless times. When they finally left Montreal in March 2022, they had a few plans in place.

“We really went without an itinerary,” Lemme says. “We had ideas of where we wanted to go, but we made plans as we went. Maybe a month in advance.”

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

“It was really unique and really funny,” she added.

They started their journey in Namibia and spent a month getting up close to elephants, zebras and giraffes before heading to Zambia and Tanzania before flying to Turkey. The family headed to Mongolia before moving on to Indonesia.

“We’re focusing on visuals,” explains Pelletier. “We also focus on flora and fauna. We’ve seen amazing animals in Africa, but also in Turkey and elsewhere.

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

The couple hopes the trip will help the children develop strong resilience, in addition to seeing their vision still strong.

“They have to be strong throughout their lives,” Lemay said, noting that Mia, Colin and Laurent will have to constantly adjust as their vision deteriorates.

Support system

“Travel is something you can learn from. It’s good and fun, but it can also be very hard. You can be uncomfortable. You can be tired. There’s frustration, so there’s a lot to learn from your travel.”

Now 12-year-old Mia has known about her illness since she was seven, Colin and Laurent recently discovered and are starting to ask tough questions.

“My youngest daughter asked me, ‘Mom, what does blind mean? Am I going to drive a car?'” says Lemay. “It’s five. But slowly he understood what was happening. It was a normal conversation for him. But for me it was heartbreaking.”

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

Lemay and Pelletier hope that spending time in different countries and experiencing different cultures will show the children how lucky they are, despite the challenges in life with their declining eyesight.

“I wanted to show them that no matter how hard their lives are, they are lucky to have running water at home and to be able to go to school every day with beautiful books,” said Lemay, adding that the four children have adjusted to life on the road relatively easily.

“They are very curious,” she says. “They adapt easily to new countries and new food. I am very impressed with them.”

While visual experiences are a priority, he says the trip is becoming more about showing the kids “something different” and providing memorable experiences.

“There are beautiful places everywhere in the world, so it doesn’t matter where we go,” she says.

“And we don’t know what surprises them, we tell ourselves. [they will think] Something is amazing and you see puppies on the street and it’s the best thing in their life.

LeMay said people who themselves have been diagnosed or have loved ones with retinitis pigmentosa have contacted her to offer words of encouragement.

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

“Every week she opens the Facebook page and comments on all the pictures or reads everything I write,” says Lemay.

“And they’re part of the journey with us in a way. Being able to share this with other people is a wonderful gift that I’m very grateful for. That makes me very happy.”

Future challenges

Lemay and Pelletier admit that the results of the diagnosis are always on their minds, but they are focused on living in the moment and “focusing their energy on positive things.”

“We don’t know when it’s going to start or how fast it’s going to go,” Pelletier added. “So we want to take this time as a family and help each of our children live this experience to the fullest.”

While the family plans to return to Quebec next March, they say they are trying not to think too far ahead. In fact, the ability to live 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 so many other things, and we want to enjoy what we have and the people around us,” Pelletier said..

“In retrospect, even in our day-to-day operations, if this continues, it’s a great achievement.”

Although it’s been trying to travel as a family — the couple has been homeschooling their children on the road — Lemay and Pelletier say one of the main things is that the bond between the children has grown stronger.

“They’re good together,” he adds. “More than that, I think it helps strengthen the relationship between them. And hopefully it will continue in the future, so they can support each other.”

Pelletier emphasized that he hopes Mia, Colin and Laurent will never go blind. But for now, they are doing their best to cope with whatever comes next.

“Hopefully, science will find a solution,” says Pelletier. “We’re crossing our fingers for that. But we know it’s possible, so we want to make sure our kids are ready to face these challenges.”