Around the world, while there’s still time

It was a journey of 384 days, spanning 13 countries. For a little over a year, Edith Lemay and her husband, Sébastien Pelletier, have shown the beauty of the world to their four children, three of whom have retinitis pigmentosa, while they are still capable.

The idea of ​​a world tour had always been in Edith Lemay’s mind. Seeing, over the years, that Mia, 12, Colin, 7, and Laurent, 5, were living with a rare degenerative eye disease causing progressive loss of sight is what gave him a sense of urgency. Leo, 10 years old, was obviously also part of the plan.

Retinitis pigmentosa, transmitted genetically, normally begins to affect its patients from adolescence. It first damages peripheral vision, as if one “could only see through a straw”, before making one completely blind in their 30s or 40s.

That’s why we had to leave. We had to allow Mia, Colin and Laurent to see what the Earth had to offer, we had to fill their heads with good memories. It was a plan originally planned for July 2020, which had to wait until March 2022 to materialize due to the pandemic context.

“It was above our expectations, says Edith Lemay in an interview. It was unclear how the children would adapt and react. They were good travelers. The landscapes were of course magnificent, but I will also remember the encounters we had: that was the less planned part, the friendships we made along the way. »

From Africa to Asia

Beginning their journey in four African countries (Namibia, Botswana, Zambia, Tanzania) and without having foreseen where they would end their journey, the family then took the road to Turkey, before visiting the steppes of Mongolia.

She continued on her way up Southeast Asia through Indonesia, Malaysia, Thailand, Cambodia and Laos. Passages in the mountains of Nepal and Oman, then a visit to the sacred lands of Egypt served as a conclusion to this extraordinary itinerary.

From all this experience, what will the children remember? Their mother believes that she will find out “in the coming months, the next few years”.

“But what I especially saw is that they have developed a great capacity for adaptation. It’s something they’re going to need. »

Do good

In order to keep her loved ones informed, Edith Lemay has created Facebook and Instagram pages entitled “Full their eyes”, where she has regularly posted photos and stories related to the trip over the past few months. Today, the Instagram account has more than 100,000 followers — and has earned it media requests around the globe.

“I didn’t expect that at all,” she admits. Some people go on a trip with the intention of becoming influencers, but that was never my goal. »

“People who subscribed, it was precious, because it forced me to write and classify my photos. Without it, I’m not sure I would have had the discipline to do it. It forced me to document my trip, and there I find myself a year later with an extraordinary memory for my children. »

The messages received were numerous, and from all walks of life. Some confided to her that they were great travel enthusiasts, parents were touched by their story, others had loved ones also living with retinitis pigmentosa, and others finally offered her accommodation in their country or simply thanked her for having told snippets of his story.

“I find it fun. The story picks people up, but everyone gets a positive out of it that may be a little different from the others. »

When we asked her to send us her favorite photos for publication, Edith Lemay shared an album that contained more than 700. “It’s my way of dealing with their diagnosis,” she said.

“I have a strong feeling of helplessness. I like to be in the action, to find a solution. It’s hard not being able to do anything but wait, with the disease. But the trip was really beneficial as a parent. »

Back in the Boucherville family nest since April 8, Edith Lemay still has her mind elsewhere.

“The children are going back to school, they are super happy. It’s a daily return. We have to finish undoing the boxes, we have to find a routine. But we’re not super good at routine, so it doesn’t change us, she laughs. Our heart is still on a journey. »

The message in this whole story? Edith Lemay has often heard the question. “You can feel sorry for yourself and get depressed, but if you accept what’s happening to you, it’s easier to move on to the next step. You have to try to make something beautiful with the beauty you have in your life. »