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The parents taking a world trip with children before they lose their vision

(CNN) — Their daughter Mia was simply three years outdated when Canadian couple Edith Lemay and Sebastien Pelletier first seen that she was having vision issues.

Just a few years after they first took her to see a specialist, Mia, the eldest of their 4 children, was recognized with retinitis pigmentosa, a uncommon genetic situation that causes a loss or decline in vision over time.

By this level, Lemay and Pelletier, who’ve been married for 12 years, had seen that two of their sons, Colin, now seven, and Laurent, now 5, have been experiencing the identical signs.

Their fears have been confirmed when in 2019 the boys have been recognized with the identical genetic dysfunction; their different son Leo, now 9, was given the all clear.

“There’s nothing you can really do,” says Lemay, explaining that there’s at the moment no remedy or efficient therapy to decelerate the development of retinitis pigmentosa.

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

Visual recollections

Edith Lemay with husband Sébastian Pelletier and their children Mia, Leo, Colin and Laurent in Ölüdeniz, Turkey.

Edith Lemay

Once they got here to phrases with the information, the couple centered their attentions on serving to their children construct the abilities they’d must navigate their means via life.

When Mia’s specialist advised that they engross her with “visual memories,” Lemay realized that there was one actually unbelievable means that they might do exactly that for her and the remainder 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,” she explains. “And I’m going to fill her visual memory with the best, most beautiful images I can.”

She and her husband quickly started planning to spend a yr touring across the globe with their youngsters.

While Lemay and Pelletier traveled collectively ceaselessly before they turned parents, and had taken their children on varied journeys, occurring an prolonged trip as a household hadn’t appeared possible before.

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

“Not solely the surroundings, but additionally the completely different cultures and folks.”

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

“That was like a little reward from life,” admits Lemay, who works in healthcare logistics. “Like, here is the cash to your trip.”

The family of six were originally due to set off in July 2020, and had planned an in-depth itinerary that involved traveling through Russia by land, and spending time in China.

Big adventure

The Lemay-Pelletier household discover the Quivertree Forest in Namibia, the place they started their world trip.

The Lemay-Pelletier family explore the Quivertree Forest in Namibia, where they began their world trip.

Edith Lemay

However, they were forced to delay their trip by a number of years due to the travel restrictions brought about by the global pandemic, and revised their itinerary countless times. When they eventually left Montreal in March 2022, they had few plans in place.

“We really left with out an itinerary,” says Lemay. “We had concepts of the place we needed to go, however we plan as we go. Maybe a month forward.”

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

“It was actually particular and really humorous on the time,” she adds.

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

“We’re specializing in sights,” explains Pelletier. “We’re additionally focusing a lot on fauna and flora. We’ve seen unbelievable animals in Africa, but additionally in Turkey and elsewhere.

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

Aside from witnessing stunning sights whereas their vision remains to be comparatively sturdy, the couple hope that the trip will assist the children develop sturdy coping abilities.

According to the National Eye Institute, a part of the US National Institutes of Health, an company of the US Department of Health and Human Services, retinitis pigmentosa signs normally start in childhood, and most of the people finally lose most of their sight.

“They’re going to need to be really resilient throughout their life,” provides Lemay, stating that Mia, Colin and Laurent must consistently readjust as their eyesight worsens.

Support system

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

The couple’s son Leo throughout the household’s go to to Cappadocia, Turkey.

Edith Lemay

“Traveling is something you can learn from. It’s nice and fun, but it also can be really hard. You can be uncomfortable. You can be tired. There’s frustration. So there’s a lot that you can learn from travel itself.”

While Mia, now 12, has recognized about her situation since she was seven, Colin and Laurent discovered extra not too long ago and are starting to ask troublesome questions.

“My little one asked me, ‘Mommy, what does it mean to be blind? Am I going to drive a car?'” says Lemay. “He’s five. But slowly, he’s understanding what’s happening. It was a normal conversation for him. But for me, it was heart-wrenching.”

For Leo, their second eldest youngster, the information of his siblings genetic situation was “always a fact of life.”

Lemay and Pelletier hope that attending to spend time in numerous nations and expertise completely different cultures will present all the children how lucky they are, regardless of the challenges which will come later in their lives as their sight deteriorates.

“No matter how hard their life is going to be, I wanted to show them that they are lucky just to have running water in their home and to be able to go to school every day with nice colorful books,” provides Lemay, who says that each one 4 of the children have adjusted to life on the street comparatively simply.

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

While visible experiences stay a precedence, Lemay says the trip has turn out to be extra about displaying the children “something different” and offering them with unforgettable experiences.

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

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

The household have been chronicling their trip through social media, posting common updates on their Facebook and Instagram accounts.

Lemay says others who’ve been recognized themselves, or have a family members with retinitis pigmentosa, have gotten in contact with her to supply phrases of encouragement.

In truth, a instructor at a specialist college in Quebec for college kids who’re blind or visually impaired is amongst their 11,000 Facebook followers and infrequently recounts their adventures to her class.

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

“And somehow they’re kind of part of the trip 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 has strengthened the bond between their four children, seen here in Mongolia.

Lemay and Pelletier say the trip has strengthened the bond between their 4 children, seen right here in Mongolia.

Edith Lemay

Lemay and Pelletier admit that the analysis is at all times at the back of their minds, however they are centered on dwelling within the second and “putting their energy into the positive things.”

“We never know when it can start or how fast it can go,” provides Pelletier. “So we really want to take this time as a family and to cater to each of our kids to be able to live this experience to the fullest.”

While the household plans to return residence to Quebec subsequent March, they say they’re attempting to not suppose that far forward. In truth, the flexibility to stay within the second is likely one of the key issues the household have discovered over the previous few months.

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

“If that can continue when we go back, even in our daily routines, it will be a really good accomplishment.”

Although touring as a household has been testing — the couple have additionally been homeschooling their children on the street — Lemay and Pelletier say one of many highlights has been witnessing the bond between the youngsters strengthening.

“They’re great together,” he provides. “Over and above, I think it helps solidify that link between them. And hopefully that will continue in the future, so that they can support each other.”

Pelletier stresses that they stay hopeful that Mia, Colin and Laurent could by no means go blind. But in the meanwhile, they are doing every part they can to make sure that they can deal with regardless of the future could maintain.

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



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