Canadian family embarks on global trip to show children losing their sight as many ‘visual memories’ as possible

Three of the Quebec family’s four young children were diagnosed with retinitis pigmentosa, a rare genetic condition that leaves most people with no vision by their mid 30s to 40s

Canadian parents with four young children – three of whom are slowly losing their sight to a degenerative disease – have finally managed to set off on their world tour of creating “visual memories.” The couple had planned to do the global trek years ago, but it was put on hold due to the Covid-19 pandemic.

“Our stomachs are on the ball, our legs are weak, but we are so excited!” parents Edith Lamay and Sébastien Pelletier wrote on their Instagram page on 11 March 2022, which functions as an unofficial blog to document their travels across the country, and now, around the world. “Sleeping in Toronto tonight, then catching a 1pm flight to Addis Ababa, then another 5:30am to Windhoek,” the post continued, before adding: “To everyone that just joined us, welcome to our adventure.”

That adventure officially kicked off years ago, when the two Quebec parents began to notice something not quite right with their eldest daughter, Mia, now 12.

It was 2018, and the eldest child of the Quebec family was a toddler who was beginning to embrace her world with outstretched arms and an unsteady gait. Even in these initial toddlings, they noticed that their daughter was having a difficult time navigating her surroundings, particularly when it was dark.

As the couple told La Presse back in 2020, the young girl would crash into furniture and walls, and would sometimes drop toys handed to her as though she couldn’t see them when the sun began to set and light in their home began to dim.

Canadian couple Edith Lemay and Sebastien Pelletier are seen alongside their four children: Mia, 12, Leo, 9, Colin, 7, and Laurent, 5 (Facebook/Le monde plein leurs yeux)

After consulting with an ophthalmologist, the expert offered up two possible hypotheses that could explain their child’s seeming shakiness with seeing things at night.

One theory the expert at Sainte-Justine Hospital in Montreal suggested was a cut-and-paste case of night blindness, which would likely resolve itself in years to come.

The second, the one which the family were more reluctant to accept at the time, was that it could be the first hint of retinitis pigmentosa, a rare genetic condition that leaves most people diagnosed with it with no vision by the time they approach middle age.

“At first, you don’t want to believe it,” Ms Lamay told La Presse. “You tell yourself that there must be a mistake, you deny it. There is anger, too. It’s like an injustice. Why my children?”

“The worst,” Mr Pelletier added, “is that we suspected that one, maybe even two other children had it.”

Mr Pelletier’s suspicions were confirmed just before the family was set to ring in 2019 as the two youngest boys, Colin, now 7, and Laurent, now 5, were also diagnosed with the same condition their older sister had only just recently learned would slowly claim her ability to see.

The diagnosis for the other two boys didn’t come as much of a surprise as Mia’s. That spring, the two parents had undergone genetic testing of their own and learned that they were both carriers of a mutation in the same gene (PDE6B), CTV Montreal reported.

The rare genetic condition is recessive, but since both parents were carriers, it meant that there was a one in four chance of each child developing it at some point in their life.

Leo, the second oldest who is now 9 years old, has yet to exhibit any symptoms for the condition.

Knowing that there was nothing they could do to treat the rare condition, as there are no known available treatments, the family began trying to prepare the three young children for an adult life that would likely be different from the one they grew up in.

“When you receive a big diagnosis like that, you expect to be taken care of,” the mother told La Presse in 2020. “But all you are told is: there is no treatment.”

Ms Lemay’s initial instincts were to teach her eldest daughter Braille, but a specialist at the child’s school informed her that kind of learning wouldn’t necessarily help her in the here and now.

Instead, she advised that she fill her daughter’s mind with as many “visual memories” as she could.

“I thought, ‘I’m not going to show her an elephant in a book, I’m going to take her to see a real elephant,” Ms Lemay told CNN recently. “And I’m going to fill her visual memory with the best, most beautiful images I can.”

In February 2020, just one month before the world would close its borders from the Covid-19 pandemic, Ms Lemay – who works in healthcare logistics – told La Presse that the family intended to embark on a yearlong global adventure. The journey would begin in Saint Petersburg and Mongolia, take them through China – “(COVID-19 permitting)”, the article noted – and continue to Southeast Asia, Sri Lanka, and Morocco.

Those plans came to a grinding halt after Canadian Prime Minister Justin Trudeau issued a travel ban on all Canadians in March 2020 and advised the nation to avoid non-essential travel outside the country.

Outside the North American country, many of the destinations the Quebec family had set their sights on issued similar directives to potential tourists.

“Today was supposed to be the day of the big departure,” the family wrote on their Instagram on 6 July 2020 alongside a big picture with the word “delayed” across it. “Our hearts are heavy, but we will enjoy the summer to explore our beautiful Quebec. Countdown again: 365 days to departure.”

The family then spent the next year keeping things pandemic-safe by keeping their travels restricted to the province. They later extended those travels east and west to explore the rest of their country.

“We’ve seen beaches all summer, but we can’t get enough of them. They are all so different with a thousand treasures to discover,” they wrote 18 August 2021.

As of March 2022, the landscape that the family was looking at in terms of pandemic-travel had shifted drastically from the scene they found themselves in just two years prior.

In the 24 months from the world shutting down, Canada had begun a vaccine campaign against Covid-19, implemented and removed vaccine mandates for domestic travellers and implemented and removed mandatory quarantines for returning international travellers (that exemption, however, still does not apply to unvaccinated arriving travellers).

Leaving Montreal last spring, the family told CNN that they had very few plans in place, but knew that the goal of the trip would focus on giving the children experiences – such as riding horses and camels – that they wouldn’t likely get to do back home.

“We actually left without an itinerary,” said the children’s mother. “We had ideas of where we wanted to go, but we plan as we go. Maybe a month ahead.”

Since leaving in March, the family has ticked off going on a safari in sub-Saharan African countries like Namibia, Zambia and Tanzania before they continued on to Turkey, Mongolia and Indonesia.

“So we’re really trying to make them see things that they wouldn’t have seen at home and have the most incredible experiences,” explained Mr Pelletier, who previously worked in finance. “We’re also focusing a lot on fauna and flora. We’ve seen incredible animals in Africa, but also in Turkey and elsewhere.”

For the family, the joys of embarking on this much-awaited family trip has been tinged with moments of sombre reflection, as the young children begin to confront what their diagnosis means for life after they return home and the bags are unpacked.

“Laurent just asked the question that hurts: ‘What does it mean to be blind?’” the parents wrote in an Instagram post shared on 29 August, which shows the 5-year-old gazing out across the horizon of a cerulean blue ocean. “I knew it was coming, but you’re never really ready, even if it’s the 3rd time,” the post continues.

“Seeing him slowly lose his innocence and, from the age of 5, realizing the extent of the challenges that await him,” the post reads. “Tomorrow we pick up the pieces, pick up our chin, and just keep biting at life. Because despite all its shadow areas and challenges, life is beautiful once you look where there is light.”