The mother and father taking a world journey with youngsters earlier than they lose their imaginative and prescient

(CNN) — Their daughter Mia was simply three years previous when Canadian couple Edith Lemay and Sebastien Pelletier first seen that she was having imaginative and prescient issues. Just a few years after they first took her to see a specialist, Mia, the eldest of their 4 youngsters, was identified […]

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

Just a few years after they first took her to see a specialist, Mia, the eldest of their 4 youngsters, was identified with retinitis pigmentosa, a uncommon genetic situation that causes a loss or decline in imaginative and prescient 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 identified with the identical genetic dysfunction; their different son Leo, now 9, was given the all clear.

“There’s nothing you may actually do,” says Lemay, explaining that there’s presently no remedy or efficient remedy to decelerate the development of retinitis pigmentosa.

“We do not understand how quick it will go, however we anticipate them to be fully blind by mid-life.”

Visible recollections

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

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

Edith Lemay

As soon as they got here to phrases with the information, the couple targeted their attentions on serving to their youngsters construct the talents they’d have to navigate their means by way of life.

When Mia’s specialist urged that they engross her with “visible recollections,” Lemay realized that there was one really unbelievable means that they might do exactly that for her and the remainder of the youngsters.

“I believed, ‘I am not going to indicate her an elephant in a ebook, I will take her to see an actual elephant,” she explains. “And I will fill her visible reminiscence with one of the best, most lovely pictures I can.”

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

Whereas Lemay and Pelletier traveled collectively often earlier than they turned mother and father, and had taken their youngsters on varied journeys, happening an prolonged journey as a household hadn’t appeared possible earlier than.

“With the analysis, we have now an urgency,” provides Pelletier, who works in finance. “There’s nice issues to do at dwelling, however there’s nothing higher than touring.

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

They quickly started making an attempt to construct up their financial savings, and their journey pot acquired a great addition when the corporate that Pelletier labored for and had shares in was purchased.

“That was like a bit present from life,” admits Lemay, who works in healthcare logistics. “Like, this is the cash in your journey.”

The household of six have been initially on account of set off in July 2020, and had deliberate an in-depth itinerary that concerned touring by way of Russia by land, and spending time in China.

Massive journey

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

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

Edith Lemay

Nonetheless, they have been compelled to delay their journey by a variety of years as a result of journey restrictions led to by the worldwide pandemic, and revised their itinerary numerous instances. Once they ultimately left Montreal in March 2022, that 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. Perhaps a month forward.”

Earlier than they set off, the Lemay-Pelletier household created one thing of a bucket record of experiences for his or her journey. In keeping with Lemay, Mia needed to go horseback driving, whereas Laurent needed to drink juice on a camel.

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

They started their journey in Namibia, the place they obtained up near elephants, zebras and giraffes, earlier than heading to Zambia and on to Tanzania, after which flying to Turkey, the place they spent a month. The household then made their technique to Mongolia, earlier than shifting on to Indonesia.

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

“So we’re actually making an attempt to make them see issues that they would not have seen at dwelling and have essentially the most unbelievable experiences.”

Except for witnessing lovely sights whereas their imaginative and prescient remains to be comparatively sturdy, the couple hope that the journey will assist the youngsters develop sturdy coping abilities.

In keeping with the Nationwide Eye Institute, a part of the US Nationwide Institutes of Well being, an company of the US Division of Well being and Human Providers, retinitis pigmentosa signs often start in childhood, and most of the people ultimately lose most of their sight.

“They will should be actually resilient all through their life,” provides Lemay, declaring that Mia, Colin and Laurent must continuously readjust as their eyesight worsens.

Help 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

“Touring is one thing you may be taught from. It is good and enjoyable, nevertheless it additionally might be actually onerous. You might be uncomfortable. You might be drained. There’s frustration. So there’s quite a bit you could be taught from journey itself.”

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

“My baby requested me, ‘Mommy, what does it imply to be blind? Am I going to drive a automotive?'” says Lemay. “He is 5. However slowly, he is understanding what’s taking place. It was a standard dialog for him. However for me, it was heart-wrenching.”

For Leo, their second eldest little one, the data of his siblings genetic situation was “all the time a reality of life.”

Lemay and Pelletier hope that attending to spend time in numerous international locations and expertise completely different cultures will present the entire youngsters how lucky they’re, regardless of the challenges that will come later of their lives as their sight deteriorates.

“Irrespective of how onerous their life goes to be, I needed to indicate them that they’re fortunate simply to have working water of their dwelling and to have the ability to go to highschool daily with good colourful books,” provides Lemay, who says that every one 4 of the youngsters have adjusted to life on the street comparatively simply.

“They’re super-curious,” she says. “They simply adapt to new international locations and new meals. I am very impressed with them.”

Whereas visible experiences stay a precedence, Lemay says the journey has grow to be extra about exhibiting the youngsters “one thing completely different” and offering them with unforgettable experiences.

“There are lovely locations in all places on this planet, so it would not actually matter the place we go,” she explains.

“And we by no means know what is going on to impress them. We are going to inform ourselves [they will think] one thing is great after which they see puppies on the street and it is one of the best factor of their life.”

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

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

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

“Each week, she opens the Fb web page and describes all the photographs or reads no matter I am writing,” says Lemay.

“And in some way they’re type of a part of the journey with us. To have the ability to share this with different folks is a very nice present that I am actually grateful for. That makes me actually completely 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 journey has strengthened the bond between their 4 youngsters, seen right here in Mongolia.

Edith Lemay

Lemay and Pelletier admit that the analysis is all the time behind their minds, however they’re targeted on residing within the second and “placing their power into the constructive issues.”

“We by no means know when it could actually begin or how briskly it could actually go,” provides Pelletier. “So we actually need to take this time as a household and to cater to every of our children to have the ability to dwell this expertise to the fullest.”

Whereas the household plans to return dwelling to Quebec subsequent March, they are saying they’re making an attempt to not assume that far forward. The truth is, the power to dwell within the second is without doubt one of the key issues the household have discovered over the previous few months.

“This journey has opened our eyes to quite a lot of different issues, and we actually need to get pleasure from what we have now and the folks which might be round us,” says Pelletier.

“If that may proceed after we return, even in our day by day routines, it is going to be a very good accomplishment.”

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

“They’re nice collectively,” he provides. “Over and above, I feel it helps solidify that hyperlink between them. And hopefully that may proceed sooner or later, in order that they will assist one another.”

Pelletier stresses that they continue to be hopeful that Mia, Colin and Laurent might by no means go blind. However in the interim, they’re doing all the things they will to make sure that they will deal with regardless of the future might maintain.

“Hopefully, science will discover a answer,” says Pelletier. “We cross our fingers for that. However we all know that it would occur, so we need to be sure our children are geared up to face these challenges.”

Kristian Gul

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