Last week, as the sun set over the craggy hills of Spitzkoppe, Namibia, Edith Lemay and her husband, Sébastien Pelletier, stared out over the vast landscape. The Canadian couple and their four children had spent the day scaling boulders, then cooled off from the desert heat in a nearby rock pool.
“There was a sweetness hanging in the air and as the sun disappeared, it gave way to more stars than we’ve ever seen in our lives,” said Lemay. “It was just … magic.”
Their children, Mia, Leo, Colin and Laurent also gazed at the deep, inky darkness of the sky, awestruck.
Three of those children will lose their eyesight in the coming years, making the experience all the more important for Lemay and Pelletier, who plan to travel for the next year to give the kids as many visually rich experiences as they can.
“I want their heads to be full of beautiful landscapes that they can remember years from now,” she said.
Mia, 11, Colin, six, and Laurent, four, were recently diagnosed with retinitis pigmentosa, a rare degenerative disorder whereby the cells of the retina gradually break down.
The loss of vision is expected to accelerate in the coming years, probably leaving them only a narrow sliver of sight by their 30s or 40s.
“There’s no cure,” said Lemay. “So it’s a waiting game and there’s nothing we can do.”
Even though neither parent has blindness in their immediate family, both are carriers of recessive genetic mutation responsible for retinitis pigmentosa.
Lemay and Pelletier’s firstborn, Mia, was diagnosed with the disorder after she had difficulty seeing objects at night, a hallmark sign. Colin and Laurent also had trouble seeing objects at night as infants, but Leo hasn’t been tested because he shows no problems with his vision.
As they digested the news that three of their children would become blind, the family initially tried to get Mia to learn braille. But in a cruel irony, her eyesight at the time was too strong.
Still, knowing that her vision would deteriorate, a specialist at the school suggested immersing the children in rich, detailed scenes.
“She said to show them giraffes and elephants. She meant books, but we figured why not just see the real thing?” said Lemay. “We’ve travelled with them before and they’re great on the road.”
Lemay, who works as a project manager, and Pelletier, who works in finance, had once dreamed of such a trip and had been saving for years to make it happen.
The family flew from Montreal, Quebec, nearly two weeks ago after their initial plans for a globe-spanning trip were delayed by the coronavirus pandemic.
Already, they have camped in the desert, sand-boarded and spotted Cape fur seals basking on the Atlantic coast.
After Namibia, they plan to travel the 1,100-mile Tazara railway from Zambia to Tanzania, where they will finally get the chance to see the big game animals most North American children only see in books.
If geopolitical tensions ease, they could be in Turkey and then Mongolia by late summer.
Lemay says she’s taken as many pictures as possible to ensure even when her children have lost most of their sight, they still have something to look back on.
“Maybe they’ll be able to look at the photographs and the pictures will bring back those stories, those memories, of the family together.”
The trip, like any foray into a new place, has also proven exhausting, as the parents juggle logistics, planning with the realities of homeschooling four children on the road. Lemay and Pelletier are documenting their travels, and occasional frustrations, on their page Le monde plein leurs yeux.
Despite moments of friction, brought on by hunger, tiredness or the realities of corralling four energetic youth, Lemay says the trip has already left her with the memories she had hoped for.
Earlier in the day, as they drove along the western coastline of the sub-Saharan nation, the family stopped to visit a famous shipwreck.
“They just asked to dip their toes in the ocean,” said Lemay. “But with kids, it’s never just the toes. Five minutes later they’re soaking wet and soon there’s sand and water in the car. But they’re just so excited.”
