Quebec family taking world tour before children lose their vision

A Quebec couple’s quest to give their children as much visual memory as possible before a degenerative eye disease robs the sight of three of their four children has taken the family on a year-long trip around the world.

But since leaving their Montreal home six months ago, Edith Lemay and Sebastien Pelletier feel like people around the world have joined their journey. Her Instagram account, which documents the journey, has grown from 1,000 to over 80,000 followers, and TV news channels in faraway lands like the Philippines and the United Arab Emirates have covered her adventures.

“I have so much love and people that reach out to me and say, ‘Thank you for inspiring me’ or ‘I have the disease, and thank you for speaking out about it and inspiring me to do something do,'” Ms. Lemay said in a phone interview from Bali.

The idea for a world tour came about when the couple’s three children were diagnosed with a terminal illness that would eventually leave them blind. A specialist told parents it would be a good idea to stuff the kids with visual memories before their eyesight went away.

Ms Lemay says the specialist felt they should show their children lots of pictures of things like animals, for example, to use as reference in the future. But she decided to take the advice literally.

“It clicked and I said, ‘I’m not going to do it with a book, I’m really going to see her,'” Ms. Lemay said. “I wanted to show them how beautiful the world is.”

Six years ago, after years of trouble with her vision, her firstborn daughter Mia was diagnosed with retinitis pigmentosa, a rare genetic condition. By 2019, two more of their children also received the diagnosis. The news came as a shock: the couple didn’t know they had the genes that could lead to the disease, and there was only a one in four chance their children would develop it.

When the couple thought of a world trip, they asked their children which sights they would like to see. Seven-year-old Colin wanted to ride a night train. Mia, 13, was in love with horses. And five-year-old Laurent had a strange desire to drink juice on a camel.

The family is now six months, six countries and three continents deep in their journey. So far they have traveled through Namibia, Zambia, Tanzania, Turkey, Mongolia and now Indonesia.

They have six months left to travel but have decided not to plan too far ahead.

There were already some organizational issues: they initially decided to leave in 2020, but COVID-19 got in their way. The pandemic-related border closures also ended her plans to visit Japan, where her nine-year-old son Leo — the only one who didn’t develop the eye disease — wanted to go for Pokémon.

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In addition to providing the children with a rich visual travel experience, Ms. Lemay and Mr. Pelletier wanted to show them how lucky they are despite their condition. They also wanted their children to experience the challenges of third world travel to prepare them for the everyday obstacles that come with blindness.

“With the disease, you always have to adjust your whole life,” Ms Lemay said. She said vision loss will not be linear and it may take well into adulthood for them to go blind.

“They can drive for a while, but then they have to stop. It will keep falling and getting back up all its life.”

So they preferred to stay in guesthouses rather than hotels, and sometimes took local transport, such as an old, rickety, air-conditioned Zambian bus that offered a detour with toilet breaks in open fields. In Mongolia, they slept in yurts without running water.

Despite the challenges and occasional struggles that come with being together 24/7, Ms Lemay said the children loved the trip.

Seeing how their children absorb the experiences of the trip has also helped Ms. Lemay and Mr. Pelletier see the world through different eyes.

“You can take them to amazing sites like the world’s tallest sand dune and then they just turn around and look at little bugs because that’s extraordinary to them,” Ms Lemay said.

With another six months to travel, she hopes her trip will continue to inspire parents of children with life-changing illnesses to make the best of their situation.

“It brought out people’s good hearts,” she said.