(CNN) — Their daughter Mia was simply three years previous when Canadian couple Edith Lemay and Sebastien Pelletier first observed 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 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 observed 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 recognized 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 present no remedy or efficient remedy to decelerate the development of retinitis pigmentosa.
“We do not know the way quick it is going to go, however we count on them to be utterly blind by mid-life.”
Visible recollections
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 abilities they’d must navigate their manner by life.
When Mia’s specialist steered that they engross her with “visible recollections,” Lemay realized that there was one really unbelievable manner that they might just do that for her and the remainder of the kids.
“I believed, ‘I am not going to point out her an elephant in a e book, I’ll take her to see an actual elephant,” she explains. “And I’ll fill her visible reminiscence with one of the best, most stunning photos 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 continuously earlier than they grew to become mother and father, and had taken their youngsters on varied journeys, occurring an prolonged journey as a household hadn’t appeared possible earlier than.
“With the analysis, now we have an urgency,” provides Pelletier, who works in finance. “There’s nice issues to do at house, 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 somewhat present from life,” admits Lemay, who works in healthcare logistics. “Like, this is the cash to your journey.”
The household of six had been initially as a consequence 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
The Lemay-Pelletier household discover the Quivertree Forest in Namibia, the place they started their world journey.
Edith Lemay
Nevertheless, they had been pressured to delay their journey by quite a few years as a result of journey restrictions led to by the worldwide pandemic, and revised their itinerary numerous occasions. After they finally 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 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 record of experiences for his or her journey. Based on 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 received 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 strategy to Mongolia, earlier than transferring 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 house and have probably the most unbelievable experiences.”
Other than witnessing stunning sights whereas their imaginative and prescient remains to be comparatively robust, the couple hope that the journey will assist the kids develop robust coping abilities.
“They’ll should be actually resilient all through their life,” provides Lemay, mentioning that Mia, Colin and Laurent must continuously readjust as their eyesight worsens.
Assist system
The couple’s son Leo through the household’s go to to Cappadocia, Turkey.
Edith Lemay
“Touring is one thing you possibly can study from. It is good and enjoyable, but it surely additionally might be actually onerous. You might be uncomfortable. You might be drained. There’s frustration. So there’s quite a bit which you could study from journey itself.”
Whereas Mia, now 12, has identified about her situation since she was seven, Colin and Laurent discovered extra lately and are starting to ask troublesome 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 occurring. 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 truth of life.”
Lemay and Pelletier hope that attending to spend time in numerous international locations and expertise completely different cultures will present all the youngsters how lucky they’re, regardless of the challenges which will come later of their lives as their sight deteriorates.
“Regardless 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 house and to have the ability to go to high school day-after-day with good colourful books,” provides Lemay, who says that every one 4 of the kids 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 turn into extra about displaying the kids “one thing completely different” and offering them with unforgettable experiences.
“There are stunning locations all over the place on the planet, so it does 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.”
Lemay says others who’ve been recognized themselves, or have a family members with retinitis pigmentosa, have gotten in contact along with her to supply phrases of encouragement.
In reality, 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 am writing,” says Lemay.
“And someway they’re type 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 completely happy.”
Future challenges
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 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 might probably begin or how briskly it might probably 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 stay this expertise to the fullest.”
Whereas the household plans to return house to Quebec subsequent March, they are saying they’re making an attempt to not suppose that far forward. In reality, the flexibility to stay within the second is without doubt one of the key issues the household have realized over the previous few months.
“This journey has opened our eyes to a variety of different issues, and we actually need to take pleasure in what now we have and the individuals which might be round us,” says Pelletier.
“If that may proceed once we return, even in our day by day routines, it is going to be a extremely 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 could by no means go blind. However in the interim, they’re doing every thing they will to make sure that they will deal with regardless of the future could 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 ensure our children are outfitted to face these challenges.”