A Quebec couple’s quest to give their children as many visual memories as possible before a degenerative eye disease robs three of their four children of their sight has led the family on a year-long trip around the world. But since they left their home in Montreal six months ago, Edith Lemay and Sebastien Pelletier feel like people all over the world have joined them on their journey. Their Instagram account documenting the trip has grown from 1,000 to more than 80,000 followers, and TV news stations as far away as the Philippines and the UAE have featured their adventures. “I received so much love and people saying, ‘Thank you for inspiring me,’ or ‘I have the disease and thank you for talking about it and inspiring me to do something,’” Ms. Lemay said in a telephone interview from Bali. The idea for a world trip began when three of the couple’s children were diagnosed with an incurable disease that would eventually leave them blind. One expert told parents it would be a good idea to stuff their kids minds with visual memories before their sight disappears. The family on the Mediterranean coast in Turkey. Brochure Ms Lemay says the expert meant they should show their children lots of pictures of things like animals, for example, for future reference. But he decided to take the advice more literally. “It clicked and I said, ‘I’m not going to do it with a book, I’m going to actually see them,’” Ms. Lemay said. “I wanted to show them how beautiful the world was.” After years of vision problems, their first-born daughter, Mia, was diagnosed six years ago with retinitis pigmentosa, a rare genetic condition. By 2019, two more of their children were also diagnosed. The news came as a shock: The couple didn’t know they had the genes that could lead to the condition, and there was only a one in four chance their children would develop it. When the couple thought about taking a world tour, they asked their children what sights they would like to see. Seven-year-old Colin wanted to go on an overnight train. Mia, 13, was in love with horses. And five-year-old Laurent had the strange request to drink juice while on a camel. Camel riding in Mongolia. Brochure The family is now six months, six countries and three continents deep into their journey. So far they have traveled from Namibia, Zambia, Tanzania, Turkey, Mongolia and now Indonesia. They will be traveling for another six months, but chose not to plan too far in advance. There have already been some organizational problems: They first decided to leave in 2020, but COVID-19 got in the way. Pandemic-related border closures also canceled their plans to visit Japan, where their nine-year-old son Leo – the only one who hasn’t developed the eye condition – wanted to go because of Pokémon. Finding a ‘fur cure’ at a BC ranch resort is more relaxing than just what the doctor ordered In addition to creating a rich visual travel experience for the children, Ms. Lemay and Mr. Pelletier wanted to show them how lucky they are despite their circumstances. They also wanted their children to experience the challenges of third-world travel as a way to prepare them for the everyday obstacles that come with being blind. “With the disease, they’re always going to have to adapt their whole lives,” Ms Lemay said. He said vision loss will not be linear and could continue into adulthood until they go blind. “They will be able to drive for a while, but then they will have to let it go. They will be constantly falling and getting back on their feet throughout their lives.” In a cabin on a night train from Zambia to Tanzania, minus Edith who took the photo. With this in mind, they chose to stay in hostels instead of hotels and sometimes took local transport, such as an old, rickety Zambian bus with no air conditioning, which included bathroom breaks in open fields during a detour. In Mongolia they lived in yurts without running water. Despite the challenges and occasional arguments that come with being around each other 24/7, Ms Lemay said the children have loved the trip. Watching their children enjoy travel experiences also helped Ms. Lemay and Mr. Pelletier see the world differently. “You can take them to amazing sights like the biggest sand dune in the world, and then they’ll turn around and look at little beetles because that’s the thing for them,” Ms Lemay said. With another six months of travel to go, she said she hopes their journey will continue to inspire parents of children with life-changing conditions to make the most of their condition. “It has brought out the good heart of people,” he said.
