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By Tamara Hardingham-Gill, CNN
Their daughter Mia was simply three years outdated when Canadian couple Edith Lemay and Sebastien Pelletier first seen that she was having imaginative and prescient issues.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, had been experiencing the identical signs.
Their fears had been confirmed when in 2019 the boys had 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 at present no remedy or efficient therapy to decelerate the development of retinitis pigmentosa.
“We don’t understand how quick it’s going to go, however we count on them to be fully blind by mid-life.”
Visible recollections
As soon as they got here to phrases with the information, the couple targeted their attentions on serving to their youngsters construct the abilities they’d must navigate their approach by life.
When Mia’s specialist prompt that they engross her with “visible recollections,” Lemay realized that there was one actually unbelievable approach that they may do exactly that for her and the remainder of the kids.
“I believed, ‘I’m not going to point out her an elephant in a guide, I’m going to take her to see an actual elephant,” she explains. “And I’m going to fill her visible reminiscence with the perfect, most stunning pictures I can.”
She and her husband quickly started planning to spend a yr touring across the globe with their children.
Whereas Lemay and Pelletier traveled collectively continuously earlier than they turned dad and mom, and had taken their youngsters on numerous 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 work in finance. “There’s nice issues to do at house, however there’s nothing higher than touring.
“Not solely the surroundings, but in addition the totally different cultures and other people.”
They quickly started attempting 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 slightly reward from life,” admits Lemay, who works in healthcare logistics. “Like, right here’s the cash on your journey.”
The household of six had been initially resulting from set off in July 2020, and had deliberate an in-depth itinerary that concerned touring by Russia by land, and spending time in China.
Massive journey
Nevertheless, they had been pressured to delay their journey by plenty of years because of the journey restrictions led to by the worldwide pandemic, and revised their itinerary numerous occasions. After they ultimately 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. Perhaps a month forward.”
Earlier than they set off, the Lemay-Pelletier household created one thing of a bucket listing of experiences for his or her journey. In response to Lemay, Mia wished to go horseback driving, 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 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 solution 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’ve seen unbelievable animals in Africa, but in addition in Turkey and elsewhere.
“So we’re actually attempting to make them see issues that they wouldn’t have seen at house and have essentially the most unbelievable experiences.”
Other than witnessing stunning sights whereas their imaginative and prescient continues to be comparatively sturdy, the couple hope that the journey will assist the kids develop sturdy coping expertise.
In response to the National Eye Institute, a part of the US Nationwide Institutes of Well being, an company of the US Division of Well being and Human Companies, retinitis pigmentosa signs normally start in childhood, and most of the people ultimately lose most of their sight.
“They’re going to must be actually resilient all through their life,” provides Lemay, mentioning that Mia, Colin and Laurent should consistently readjust as their eyesight worsens.
Assist system
“Touring is one thing you may study from. It’s good and enjoyable, but it surely additionally might be actually exhausting. You might be uncomfortable. You might be drained. There’s frustration. So there’s quite a bit that you could study from journey itself.”
Whereas Mia, now 12, has identified about her situation since she was seven, Colin and Laurent discovered 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’s 5. However slowly, he’s understanding what’s occurring. It was a traditional dialog for him. However for me, it was heart-wrenching.”
For Leo, their second eldest youngster, the data of his siblings genetic situation was “all the time 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 exhausting their life goes to be, I wished to point out them that they’re fortunate simply to have working water of their house and to have the ability to go to high school day by day 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’m very impressed with them.”
Whereas visible experiences stay a precedence, Lemay says the journey has change into extra about displaying the kids “one thing totally different” and offering them with unforgettable experiences.
“There are stunning locations in every single place on the earth, so it doesn’t actually matter the place we go,” she explains.
“And we by no means know what’s going to impress them. We’ll inform ourselves [they will think] one thing is great after which they see puppies on the street and it’s the perfect factor of their life.”
The household have been chronicling their journey by way of social media, posting common updates on their Facebook and Instagram accounts.
Lemay says others who’ve been identified themselves, or have a family members with retinitis pigmentosa, have gotten in contact along with her to supply phrases of encouragement.
Actually, a instructor at a specialist college in Quebec for college students 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’m writing,” says Lemay.
“And by some means 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 reward that I’m actually grateful for. That makes me actually joyful.”
Future challenges
Lemay and Pelletier admit that the analysis is all the time behind their minds, however they’re targeted on dwelling within the second and “placing their power into the optimistic issues.”
“We by no means know when it might begin or how briskly it might go,” provides Pelletier. “So we actually wish to take this time as a household and to cater to every of our children to have the ability to reside this expertise to the fullest.”
Whereas the household plans to return house to Quebec subsequent March, they are saying they’re attempting to not assume that far forward. Actually, the power 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 numerous different issues, and we actually wish to take pleasure in what we have now and the folks which can be round us,” says Pelletier.
“If that may proceed after we return, even in our each day routines, will probably be a extremely 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 youngsters strengthening.
“They’re nice collectively,” he provides. “Over and above, I feel it helps solidify that hyperlink between them. And hopefully that can proceed sooner or later, in order that they’ll help one another.”
Pelletier stresses that they continue to be hopeful that Mia, Colin and Laurent might by no means go blind. However in the intervening time, they’re doing every part they’ll to make sure that they’ll 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 would occur, so we wish to be sure our children are outfitted to face these challenges.”
The-CNN-Wire
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