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A Quebec family of six travelled three continents in the past year, in an effort to create memories before their children lose their eyesight.
Edith Lemay, 44, and Sébastien Pelletier, 45, are parents to four children, three of which were diagnosed with retinitis pigmentosa — a disease that progressively causes blindness.
They recently concluded a year-long trip to ensure their children would have visual memories of the world, as the family accepts its future.
But before getting to that point, the parents went through "a grieving process" when Mia, 11; Colin, 7; and Laurent, 5 were diagnosed in 2018, Lemay said.
"You go through all the phases; you're angry, and you think it's not fair... 'Why me? What have I done to deserve that?'" Lemay remembered questioning.
"There's a lot of sadness, also, for your family and for your kids."
But, she said letting go of past expectations mattered the most.
"You just accept that it's not the end of the world, it's just a different path for them in life."
What is retinitis pigmentosa?
Retinitis pigmentosa (RP) is a genetic retinal disease that causes gradual vision loss. There's currently no cure for it.
The disorder damages light-sensitive cells (photoreceptors), responsible for absorbing light and translating it into signals that are interpreted by the brain. They are essential to vision, but with this disorder, the photoreceptors eventually die off, according to Fighting Blindness Canada (FBC).
Generally, peripheral and night vision are the first to be affected by RP, followed by the narrowing of the visual field — also known as "tunnel vision." Eventually central vision is also lost, leading to near or complete blindness.
"The length of this process varies from individual to individual," said FBC.
Mia was the first to be diagnosed in 2018, when she was seven, after she had been bumping into things and struggling to see at night. Soon after, all the children were tested and Colin and Laurent were also diagnosed.
All three of the Pelletier kids with the disease have lost their night vision, their mother said.
"They're expected to be totally blind by midlife, but there's a possibility they can keep a little part of their field of vision," Lemay explained.
"Right now, their vision is good... but their night vision is gone.
"When the light is dim, they can't see anything, so we need to use flashlights or hold hands when we walk outside in the dark."
Both Lemay and husband Pelletier both carry a recessive mutated gene (PDE6B) for the disease.
"We didn't know about it," Lemay said. She added there was one in four chances of them transmitting both defective genes to their kids together. In their case, it happened three times.
'I was crushed'
Lemay said one of the most difficult parts of the diagnosis was deciding whether to tell the kids, especially her oldest, Mia. The parents were getting mixed advice from those around them — some saying it's best to not worry her until her symptoms worsen, while others said she should prepare.
"Knowing my daughter, I decided that it was best for her to know right away. I didn't want to hide anything from her," Lemay said. "I told her matter-of-fact that... 'you will probably [be] blind once you're an adult.'
"And she thought about it for a moment, and then she just said, 'Oh, well that's not fun.' And that was the extent of of her reaction," the mom recalled.
"After that, I saw her a couple times trying to get from one room to the other in the house, keeping her eyes closed," she said, adding it was reassuring.
"I think you project your own fear into your child... I was scared that she would be scared, that she will be sad and angry."
Now-five-year-old Laurent only began asking questions about his vision a month ago.
"He just looked at me and asked me, 'What does it mean to be blind?'... And so I just told him, 'it's like keeping your eyes closed all the time,'" Lemay said.
"Inside, I was crushed. It was a really hard moment for me."Edith Lemay, 44
Filling their visual memory through travel
Lemay decided she wanted to prepare Mia and enroll her in braille lessons, but even that was moot according to a specialist, as her vision was still too good to learn properly.
"She said, 'Just put as much image in her head as you can, for example, you can look at elephants or giraffe in a book. So once she's blind, she'll have an image to refer to.'
"And for me, that's when like it clicked, that's when I thought to myself, 'well, let's go [see] elephants and giraffes in real life."
"Seb and I just decided that we might as well do it — like all in — just go see the world and show them how beautiful the world is."
And that's what the family did.
In March 2022 — after initial plans were cancelled to COVID-19 — the family set on to travel the world.
Lemay, who works in healthcare logistics, and Pelletier who works in finance, both quit their jobs for the trip.
The six of them first flew into Namibia, where the year-long adventure began. It took them to Zanzibar, Thailand, Nepal and 10 other countries.
"The kids were so excited to get to see [the animals] in real life. They were so impressed by how tall the giraffe was from close-up, and same for the elephant," Lemay recalled.
We wanted to fill their visual memory with as many beautiful things as we could.Edith Lemay, 44
On the trip, she said, they weren't staying at hotels. They often chose to stay in nature, sleep on buses, live with locals.
"There's frustration, it can be hot and we can be hungry, we can be tired, so they need to adapt all the time.
"And I hope they get that from the trip, that it's going to help them become a little more resilient in life."
"The last thing we want them to get from that trip is we want them to realize how lucky they are," Lemay said, adding the kids witnessed rough conditions in some places they visited.
"They're actually really, really privileged.
"Even if their condition is going to make their life a little harder than other people... they still have a lot to be grateful for."
The family returned to their home in Quebec in April for Mia to finish the school year, but their adventure isn't over yet.
Lemay said they're planning to be away for the summer, this time visiting Ecuador and possibly Columbia.
As for the kids' future, they're moving forward with optimism.
She said, however, finding a cure is possible. Lemay encourages Canadians to support Fighting Blindness Canada, so families like hers can ensure a better future.
"That's the only hope for the future for our kids — to research and find a cure."