The dad and mom taking a world journey with youngsters earlier than they lose their imaginative and prescient

The dad and mom 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.

A number of years after they first took her to see a specialist, Mia, the eldest of their 4 youngsters, was recognized 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 recognized 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 at present no remedy or efficient therapy to decelerate the development of retinitis pigmentosa.

“We do not know the way quick it should go, however we count on them to be fully blind by mid-life.”

Visible reminiscences

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

When Mia’s specialist advised that they engross her with “visible reminiscences,” Lemay realized that there was one really unimaginable manner that they may just do that for her and the remainder of the kids.

“I assumed, ‘I am not going to point out 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 photographs I can.”

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

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

“With the prognosis, 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 folks.”

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 just a little present from life,” admits Lemay, who works in healthcare logistics. “Like, this is the cash on your journey.”

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

Large journey

Nevertheless, they have been pressured to delay their journey by quite a few years because of the journey restrictions caused by the worldwide pandemic, and revised their itinerary numerous instances. Once they finally left Montreal in March 2022, that they had few plans in place.

“We truly left with out an itinerary,” says Lemay. “We had concepts of the place we wished to go, however we plan as we go. Possibly 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. In accordance with Lemay, Mia wished to go horseback using, whereas Laurent wished 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 acquired 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 solution to Mongolia, earlier than shifting on to Indonesia.

“We’re specializing in sights,” explains Pelletier. “We’re additionally focusing lots 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 essentially the most unimaginable experiences.”

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

In accordance 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 normally start in childhood, and most of the people finally lose most of their sight.

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

Help system

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

Whereas Mia, now 12, has recognized about her situation since she was seven, Colin and Laurent discovered extra lately and are starting to ask tough questions.

“My infant 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 traditional dialog for him. However for me, it was heart-wrenching.”

For Leo, their second eldest baby, 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 the entire youngsters how lucky they’re, regardless of the challenges which will come later of their lives as their sight deteriorates.

“Irrespective of how onerous their life goes to be, I wished to point out them that they’re fortunate simply to have operating water of their residence and to have the ability to go to high school daily with good colourful books,” provides Lemay, who says that every one 4 of the kids 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 change into extra about exhibiting the kids “one thing totally different” and offering them with unforgettable experiences.

“There are lovely locations in all places on the 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 fantastic 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 by way of social media, posting common updates on their Fb and Instagram accounts.

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

Actually, a trainer at a specialist faculty 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 sort 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 comfortable.”

Future challenges

Lemay and Pelletier admit that the prognosis is at all times behind their minds, however they’re centered on residing within the second and “placing their vitality into the optimistic issues.”

“We by no means know when it could begin or how briskly it could 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 suppose that far forward. Actually, the flexibility to reside within the second is among the key issues the household have discovered over the previous few months.

“This journey has opened our eyes to loads of different issues, and we actually wish to get pleasure from what we’ve and the folks which can be round us,” says Pelletier.

“If that may proceed after we return, even in our every 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 highway — Lemay and Pelletier say one of many highlights has been witnessing the bond between the children strengthening.

“They’re nice collectively,” he provides. “Over and above, I believe it helps solidify that hyperlink between them. And hopefully that can 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 pieces they will to make sure that they will deal with regardless of the future might 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 make certain our youngsters are outfitted to face these challenges.”