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

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

(CNN) — Their daughter Mia was simply three years outdated when Canadian couple Edith Lemay and Sebastien Pelletier first observed that she was having imaginative and prescient issues.

A number of years after they first took her to see a specialist, Mia, the eldest of their 4 kids, 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 observed 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 possibly can actually do,” says Lemay, explaining that there’s at the moment no remedy or efficient remedy to decelerate the development of retinitis pigmentosa.

“We do not understand how quick it should go, however we anticipate them to be utterly 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 kids 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 kids construct the talents they’d must navigate their means via life.

When Mia’s specialist steered that they engross her with “visible recollections,” Lemay realized that there was one actually unimaginable means that they may do exactly that for her and the remainder of the youngsters.

“I assumed, ‘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 photos I can.”

She and her husband quickly started planning to spend a 12 months touring across the globe with their youngsters.

Whereas Lemay and Pelletier traveled collectively regularly earlier than they grew to become mother and father, and had taken their kids on numerous journeys, occurring an prolonged journey as a household hadn’t appeared possible earlier than.

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

“Not solely the surroundings, but in addition the totally different cultures and other people.”

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

“That was like just a little 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 as a result of set off in July 2020, and had deliberate an in-depth itinerary that concerned touring via Russia by land, and spending time in China.

Large 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 plenty of years because of the journey restrictions caused by the worldwide pandemic, and revised their itinerary numerous instances. Once they ultimately left Montreal in March 2022, they’d 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 checklist of experiences for his or her journey. Based on Lemay, Mia needed to go horseback using, 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 bought 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 option to Mongolia, earlier than transferring on to Indonesia.

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

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

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

Based on 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 normally start in childhood, and most of the people ultimately lose most of their sight.

“They are going to should be actually resilient all through their life,” provides Lemay, mentioning that Mia, Colin and Laurent must continually readjust as their eyesight worsens.

Assist 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 possibly can study from. It is good and enjoyable, however it additionally may be actually exhausting. You may be uncomfortable. You may be drained. There’s frustration. So there’s rather a lot which you could study from journey itself.”

Whereas Mia, now 12, has identified about her situation since she was seven, Colin and Laurent came upon extra just lately and are starting to ask troublesome questions.

“My toddler requested me, ‘Mommy, what does it imply to be blind? Am I going to drive a automobile?'” 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 youngster, the data of his siblings genetic situation was “at all times a truth of life.”

Lemay and Pelletier hope that attending to spend time in several nations and expertise totally different cultures will present all the kids how lucky they’re, regardless of the challenges which will come later of their lives as their sight deteriorates.

“Regardless of how exhausting their life goes to be, I needed to indicate them that they’re fortunate simply to have operating water of their residence and to have the ability to go to high school on daily basis with good colourful books,” provides Lemay, who says that each one 4 of the youngsters have adjusted to life on the highway comparatively simply.

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

Whereas visible experiences stay a precedence, Lemay says the journey has turn out to be extra about exhibiting the youngsters “one thing totally 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’ll 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.

Actually, a instructor at a specialist college in Quebec for college kids who’re blind or visually impaired is amongst their 11,000 Fb followers and sometimes 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 by some means they’re form of a part of the journey with us. To have the ability to share this with different individuals is a very nice present that I am actually grateful for. That makes me actually glad.”

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 kids, 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’re targeted on dwelling within the second and “placing their vitality into the optimistic issues.”

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

Whereas the household plans to return residence to Quebec subsequent March, they are saying they’re making an attempt to not assume that far forward. Actually, the flexibility to reside within the second is likely one of the key issues the household have discovered over the previous few months.

“This journey has opened our eyes to a number of different issues, and we actually wish to take pleasure in what we’ve and the individuals which can be round us,” says Pelletier.

“If that may proceed once we return, even in our day by day routines, will probably be a extremely good accomplishment.”

Though touring as a household has been testing — the couple have additionally been homeschooling their kids on the highway — 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 believe 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 could by no means go blind. However in the intervening time, they’re doing all the pieces they will to make sure that they will deal with regardless of the future could maintain.

“Hopefully, science will discover a resolution,” says Pelletier. “We cross our fingers for that. However we all know that it’d occur, so we wish to be sure that our youngsters are outfitted to face these challenges.”

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