Rather than stuffing them full of images of animals and landscapes in the comfort of their own home, the couple decided to stop by locally during a long journey across multiple continents with their four children, ages 5 to 12.
“Right now their field of vision is excellent during the day, so we took the opportunity to see not only beautiful landscapes, but also very wide landscapes where they can enjoy the magnificence of the spaces,” says Sébastien Pelletier.
The final diagnosis, retinitis pigmentosa, came in 2018 after months of medical and genetic testing. The couple decided to prepare the three of their four affected children for what was to come. All three carry a gene that already robs them of night vision.
Over the years their peripheral vision will shrink as shown in the photo album below. Urgent action was therefore required.
1 of 2
The family will have spent 25 days in Nepal, a destination that will make you fall in love at first sight. Here is one of the unforgettable landscapes they saw there. Photo: Radio Canada / Courtesy Edith Lemay
Show previous image
See next picture
“After we digested the shock, we decided to say it so we could live with it and make something out of it. »
— A quote from Sébastien Pelletier, father
Edith Lemay, who has always loved photography as a hobby, has created a blog (New window) and Instagram page so family and friends can follow the six travelers.
For me it was a must to take photos during the trip. I wanted to capture every second because they can see the images for a long time,” she explains. They will lose their field of vision, but the photos and the memories associated with the photos will consult them for a long time.
Departure postponed, itinerary changed
The family was due to move out in spring 2020, but like everything else, the project has been put on hold by the COVID-19 pandemic.
Two years later, the sense of urgency is even more pressing. Elementary school will soon be over for Mia, her oldest. The window for a long journey is about to close. In order to be able to return before the end of Mia’s 6th year, it was necessary to leave in spring 2022.
The young family also stayed in Egypt.
Photo: Courtesy of Edith Lemay
Even if it were still the pandemic, we said to ourselves: we’ll go where it’s open and we’ll see the rest […] Southern Africa was open, so we started with Namibia, says the father.
The geopolitical situation had also changed significantly in the meantime. Therefore, they disregarded Russia, which was envisaged in the original itinerary, but kept their idea of spending the summer in Mongolia. Added unexpected destinations that have become favorites such as Nepal and Egypt.
Your travel report has been causing a stir on social networks for weeks. Her story has also gone around the world. More than 100,000 people follow her Instagram account The World in Her Eyes (New window). Edith Lemay receives hundreds of testimonials telling her family is an inspiration.
The couple is very surprised by the reaction of media outlets big and small, asking for interviews to hear their story from everywhere in their path: The Guardian, NBC, CBS, The Independent, Times of India, RDI etc.
There are also pictures and encounters. Here in Nepal, Leo and Colin play ball with young monks.
Photo: Courtesy of Edith Lemay
The family also receives testimonials from people with vision problems and retinitis pigmentosa. Edith Lemay draws great comfort from this.
People living with retinitis pigmentosa tell us how badly it has affected them. “These testimonials were invaluable to me,” she says. [Ils] Tell us they live a super good life and are happy. As a parent, it is reassuring to have these testimonials.
The benefits of travel: simplicity and resilience
Edith and Sébastien both quit their jobs to take part in this journey designed to fill children’s visual memories. Sebastien was able to sell his stake to the company he worked for, giving them a financial boost.
Then you can cope with everyday life like everyday life at home. “You set yourself a budget and try to stick to it,” explains the family man. The traveling family was able to live and spend 384 days traveling with their budget of 120,000 dollars, including plane tickets.
Edith Lemay and Sébastien Pelletier with their four children aged 5 to 12, Mia, Léo, Laurent and Colin.
Photo: Courtesy of Edith Lemay
Daily life also means managing three six-person suitcases, learning French and math to continue the children’s education, while making long journeys on sometimes overcrowded trains and buses.
In addition, upon their return, they realize how much differently the essentials are combined elsewhere and that there are many useless objects in our affluent society. More life lessons from this journey: resilience and adaptability.
“I was amazed at how well they learn to adapt,” says Edith. And with retinitis, my children’s vision will change a lot and my children will constantly adapt, they have to constantly readjust.
There is great astonishment at this unexpected wave of popularity that has swept over her. But over time, Sébastien Pelletier and Edith Lemay realized that they could help raise public awareness of a genetic disease. A degenerative disease that is irreversible and incurable.
Her story has been followed all over social media. It must be said that it is not trivial: three of the four children of the Pelletier family will gradually lose their sight due to a hereditary eye disease, retinitis pigmentosa. The parents therefore decided to fill their visual memory by traveling to three continents for more than a year. A report by Anne-Louise Despatie.
There isn’t that much research, Edith Lemay regrets. It takes money and the only hope is that we can find something and stop the progression of my children’s disease.
Last week, the family was invited to New York to share their experiences at the Fighting Blindness Foundation Gala. This is because others recognized their qualities as ambassadors of this disease and its cruel consequences long before they did.
But before they become too noticeable, the family will be leaving this summer to store images from another continent in Ecuador.