Three of their four kids are losing their vision. So, they’re going on a year-long world tour to make visual memories, before it’s too late

Many parents dream of their children growing up and seeing the world. But Edith Lemay, a mother of four from Canada, feared her children wouldn’t have time for this anymore.

When her first child, Mia, was little, she noticed that she often bumped into things. Concerned about her daughter’s vision, Lemay took her to a doctor. In 2018, Mia was diagnosed with retinitis pigmentosa.

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“What it does is that over time the cell in the retina dies and they lose their field of vision. You will lose your view from the outside in and by the end it will be like seeing through straw. And there’s a chance they’ll go completely blind by midlife,” Lemay told CBS News.

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The disease is genetic, meaning Lemay’s other children were at risk. She soon noticed that two of her sons, Collin and Laurent, had the same symptoms. They were also soon diagnosed.

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Lemay and her husband Sebastian Pelletier with their children Mia, Leo, Collin and Laurent.

Edith Lemay

“Of course it was devastating. And when you have a child you always have a picture of what their future will be like and what your future will be like and suddenly you get this message and you need to erase that and think about it. And it’s really a grieving process,” Lemay said.

Lemay said she speaks openly with her children about the disease, but her younger sons may be too young to fully realize what will happen to their vision. “My little one… what I didn’t realize was that he didn’t know what it meant to be blind,” Lemay said. “And of course, he’s five, so he started asking hundreds of questions: how am I going to cross the street, how am I going to drive my car, is my wife going to be blind?”

“It was a heartbreaking moment because I was trying to keep it as positive and normal as possible … but inside it was really hard,” she said.

Luckily, she said, her daughter is being realistic. “When people ask her, ‘How do you feel about that?’ Her answer is always the same: “Today is today. Today I have a good view, so I will make the best of it. And in the future, when challenges come, we will face them and find a solution.”

Lemay wanted to prepare her children for what was to come and thought about teaching them braille, but a specialist had another suggestion.

“They said the best thing you can do is fill up your visual memory,” Lemay said. “And they talked about reading books and seeing pictures of elephants and giraffes in books. And then it clicked. I was like, ‘I’m not going to do this in books, I’m going to see them in real life.'”

In March, the family left Canada to embark on a world tour. They expect a year and have already been to Africa, Turkey, Mongolia and Indonesia.

Edith Lemay

In March, Lemay, her husband and their four children left Canada and embarked on an epic journey that took them a full year to travel the globe and show their children the world before it was too late.

Now they are in Bali – having already crossed Africa, from Namibia to Tanzania. They also visited Turkey and Mongolia and plan to work their way through Asia.

“They’re kids, they get excited about pretty much anything. They don’t go through it with the urgency to see things and remember things. They don’t think about it, ‘Oh, it might be the last time I see that thing.’ They’re really in the moment and they’re enjoying it,” Lemay said.

During her trip, Lemay homeschools her children. The family also created a bucket list of fun activities to do so each child can see their dreams come true.

Mia, 11, wanted to go horseback riding. They took it off their list in Mongolia. “She felt so free. After riding, she had tears in her eyes. It was really nice to look at,” Lemay said.

5-year-old Laurent on a camel with a juice box.

Edith Lemay

Collin, 7, wanted to sleep on a train. “So we went to the Tazara [Railway] in Tanzania and we all had our bunk beds on the train and we slept while being rocked by the movement of the train. He was super happy,” she said.

Laurent, 5, had an interesting idea. “He wanted to drink juice on a camel. That was really specific and we thought it was so funny,” laughed Lemay. “And we actually did that when we were in Mongolia we went camel riding and got a juice for him just to take a picture and he was super happy.”

Lemay said her children don’t just make visual memories. You’ll also learn important life lessons like focusing on the positive. “It’s not an easy journey. It’s uncomfortable. Sometimes they are tired and there is frustration and we are hungry. It’s tough. But with the journey, I want them to be resilient,” she said.

“I want them to know that every difficult situation is temporary because they’re going to need a lot of resilience throughout their lives,” she said. “They’re going to adjust their vision to a situation and then in a couple of years or a couple of months they’re going to lose some of their vision and they’re going to have to readjust and adjust and fall and come back,” Lemay continued.

Many parents want to give their children the world – and this mom did it.

Lemay says her children not only create visual memories, but they also learn important life lessons like focusing on the positive.

Edith Lemay

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