The Pelletier family (from left): Mia, Sebastien, Colin, Edith Lemay, Laurent and Leo in Kuujjuaq, Canada. Image: National Geographic/Katie Orlinsky)
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“I won’t see them when I’m blind,” says five-year-old Laurent in new documentary film Blink. “Mum’s photos, I won’t see them when I’m blind. That’s why I have to invent a medicine to cure blindness.”
“And you’ll cure Mia and Colin’s eyes, too?” his mother Edith asks. Three of her four children have retinitis pigmentosa, a rare and incurable disease which means they are slowly losing their sight.
“If that doesn’t work I’ll invent a machine, because I don’t want to be blind,” Laurent says, sprawled across his father Sébastien’s lap surrounded by his family. “Maybe I’ll just be blind for a little bit?”
Faced with the life-altering diagnoses, Edith and Sébastien made a remarkable decision. Instead of dwelling on the fear of darkness in their children’s future, they embarked on a journey around the world to fill their memories with breathtaking views and once-in-a-lifetime moments.
“There is nothing you can do with retinitis pigmentosa,” says Edith, over video call from their home in Montreal, Canada, two years on. “You feel powerless not to be able to take action. A specialist said I could show them elephants and giraffes to fill their visual memory. That was the spark.
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“I decided we were going to see them in real life. Of course, he was in straight away,” she nudges Sébastien sitting next to her. “We started adding destinations and we realised it’s going to be more than a short trip. It ended up being a whole year.”
Their adventure is the subject of the film Blink from National Geographic, directed by Edmund Stenson and Daniel Roher, who won an Oscar for his documentary Navalny in 2022.
“As a documentary filmmaker, when you get asked: ‘Do you want to travel around the world with this incredible family and go on this journey?’ It’s not a hard question to answer,” Edmund says.
Edith and Sébastien were less convinced. “Our first thought was: ‘Whoa. Nice.’ It’s gonna make a nice souvenir for the kids because, in our head, nobody watches documentaries. We never expected it to be so big. Another thought was, did they really want to travel with four kids? Are they crazy? I was worried about the team,” Edith laughs.
Mia, Leo, Colin, and Laurent Pelletier pose on top of their camper van in front of a double rainbow while in Mongolia while filming Blink. (Credit: Edith Lemay)
The kids, who were 11, nine, seven and nearly five at the time, steered the trip. They crafted a bucket list based on what they wanted to do most: go on a safari, sleep on a train, eat ice cream (obviously), ride horses in Mongolia, learn to surf, drink juice on a camel (yes, really), see sunrise from a mountain, make friends in other countries, eat with chopsticks. It kept growing.
“We wanted to show them the world,” Edith says. “We thought we were going to teach them. But very early in the journey, we realised they were sometimes more interested in stray cats than a nice, big monument, even if it’s rare and we travelled far to see it. As an adult, our reflex was to say: ‘No, don’t look at the cat. You see cats all the time.’
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“Then when you take a moment to look at the little cat and see how cute it is, we realise it is beautiful. Beauty is all around us. If we take the time to appreciate the world through their eyes, we see a lot more. So it shifted the trip. We were not showing them the world. We were giving them the opportunity to explore the beauty of the world in their own way.”
(Clockwise from left) Mia, Colin, Laurent, and Leo Pelletier lay in the snow and look up to the sky in Kuujjuaq, Canada, in Blink. (Credit: National Geographic/Katie Orlinsky)
Sébastien adds: “The good thing that the trip brought for us adults is to look at life as it is in front of us. As Mia puts it, what’s in the future is in the future, and at least for now, there’s no control over it. So let’s just make sure that we focus on this and we’ll see what happens afterwards.”
The parents have had to learn not to impose their emotions on the children. Edith says: “We see the future, and we are really scared for our kids, and we thought it was going to be awful for them to receive that news, but then telling them, we realised that they are a lot stronger than we think.
“They’re in the present moment. So for them, it’s OK. They will manage. Mia was the first one we told. She was so strong and so calm about it that it gave us the strength to be strong ourselves.”
There are times when reality hits them. In the opening scene of the documentary, the family trudges in a line through deep snow in Canada. It is a struggle for the little ones but they make it to their destination. It is pitch-black but for the green colours of the Northern Lights painted through the sky, in a moment so many people wait for all their lives.
But Mia, Colin and Laurent cannot see anything. Their night vision is gone.
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“I realised I was different, because other people saw stars and not me,” says 11-year-old Mia in the documentary. “When I’m in the dark, I lose my sense of place. I feel like I’m in a space without any light: none, none, none. And it feels really strange. It feels like I’m in the void. I always need to touch something. So at night when I can’t see, I touch something. And it helps me feel less scared.”
Leo, Laurent, Edith, Colin, Mia, and Sebastien look out at the mountains in the Annapurna range in Blink. (Credit: MRC/Jean-Sébastien Francoeur)
When Edith first realised that Mia could not see stars, that was painful. It was the first time she had to let go of something. It was the beginning of beautiful things they would have to let go, but they know there is so much beauty to be found in the world without sight.
Even in this film, Edmund says they have worked hard on the audio description, so that people with visual impairment are given the tools to experience Blink in cinemas, as much as anyone else.
Towards the end of the documentary, Leo – their one child who has not been diagnosed with retinitis pigmentosa – is asked how he has changed over the course of the trip. And he replies, sensibly, how is he supposed to know how he has changed?
“Kids change so much, so it’s always hard to pinpoint, is it them growing up or them just changing?” Edith asks. “But as a family, I know we grew a lot closer, and I think it made us really appreciate the present moment, and appreciate the time we spend with our kids.”
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Leo, Colin, Laurent, Mia, Sebastien Pelletier, and Edith Lemay take a brief rest in Blink while trekking to the Poon Hill viewpoint in Nepal. (Credit: MRC/Jean-Sébastien Francoeur)
They returned to Canada over a year ago. It was tricky to adjust to for Edith and Sébastien, but the kids slipped back into their routine with ease, returning to school and their friends.
“We’re focused on being there much more than we used to, and spending time together,” says Sébastien. “They’re not going to be small for long anymore. There’s debates on whether we focus on a cure and things like that. But I think at this point, it’s really just about taking time with the kids.”
Their family’s future might be uncertain, but they are filled with hope. “For our kids, seeing them being so resilient on the trip reassured us,” Edith says. “We know everything’s going to be OK. It doesn’t matter what happens or how fast they lose their vision.
“They’re going to find ways and we’re not worried. It’s going to be hard. But in the hard moments, they’re able to get back on their feet and keep going.”
Blink is in cinemas now.
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