Heartbreaking, inspiring…the family that went to see the world before their children went blind

Like many moms, Edith LeMay is a picture child. During the epic family vacation she is now taking, I have taken thousands of photos.

You sent me a file with the edited highlights. It contains nearly 400 photos – great images of not just her children’s wide smiles, but of gorgeous sunsets, waterfalls, wildlife, and rainbows. The best you can see in the world, basically.

“I take a lot of pictures,” she admits. I’m a little crazy about this aspect, but that’s my way of coping. I want to capture every part of this trip so my kids can see the pictures for as long as possible.

Looking at images requires only a small field of view. It’s about building that memory, on top of what they actually see – the hard drive of their memories, in a way.

Edith LeMay, 44, is on an adventure of “making visual memories” with her family. Her four children are photographed here on the slopes in Mongolia

You may have gathered that this is no ordinary family vacation. Edith, 44, her husband Sebastian, 45, and their four children go on what she calls an adventure of “making visual memories.”

In short, they see the world literally – and while they still can, because three of Edith’s four children are slowly going blind.

In 2018, their eldest child, 11-year-old Mia, was diagnosed with retinitis pigmentosa, a severe condition that causes optic cells to collapse, gradually stealing sight. The condition is hereditary, although the faulty genes responsible have not been reported to be present in the wider family before.

“We were both pregnant, unknowingly,” Edith says. There was no history in either family. They told us we had a one in four chance of passing this on to our children. Unfortunately, we got three out of four.

A Canadian family of four is taking a round-the-world trip after sons, 7 and 5, and daughter, 11, are diagnosed with a rare genetic condition that makes them blind by middle age.  They are photographers here in Turkey

A Canadian family of four is taking a round-the-world trip after sons, 7 and 5, and daughter, 11, are diagnosed with a rare genetic condition that makes them blind by middle age. They are photographers here in Turkey

By the time the family realized what they were dealing with — that Mia was already on her way to blindness — her two young sons, Colleen, seven, and Laurent, five, had also developed symptoms.

“Once they told us Mia had it, I knew my two little boys had it, too,” says Edith.

The diagnosis confirmed that nine-year-old Liu was the only child likely to reach adulthood with good eyesight. They found themselves in a sad situation of course, but after initial shock and denial (Edith admits it was like stages of grief), this adorable couple decided to fill the minds of their young children with many unforgettable images. as possible.

And real photos – from life, not from books or the Internet. “It was really a case of, ‘Why do we look at an elephant in a book when we can go and see the real thing. Edith says.

It’s about building the hard drive for their memories’

The trip of a lifetime has been planned. They sat with their children and asked them where in the world they would like to go and, more relevantly, what they would like to see there. The results were charming and a bit unexpected. “We’ve put together a bucket list, not just about countries or places, but about activities.”

What do they really want to do? “Mia liked horses so she wanted to ride. Colin wanted to sleep on a train or boat. Laurent, the little one, was too young to understand but he made us laugh. He wanted to drink juice while sitting on a camel.

They went to find a camel. And the rest. They rented their house for a year and did this thing that most people dream about but rarely do (or rarely can do) and just got off the ground.

Edith and her husband decided to fill the minds of their young children with as many unforgettable images as possible.  family in Mongolia.  Laurent, five, wanted to drink juice while he was riding

Edith and her husband decided to fill the minds of their young children with as many unforgettable images as possible. family in Mongolia. Laurent, five, wanted to drink juice while he was riding

Since leaving their native Canada six months ago, the family has visited Namibia, Zambia, Tanzania, Turkey, Mongolia and Indonesia. When I met Edith, they were on my mind, about halfway through their journey.

What have they seen so far? Perhaps a better question is, what did they not see? The wildlife flagged on the list includes elephants, giraffes, zebras, and leopards, most seen on safari in Africa. We saw a giraffe on our first day. Laurent said, “Is this real?”

Mia got to ride her wild horses – in Mongolia. They also slept in a tent, took a hot balloon, pitched their tents in the Gobi desert, and swam in thermal pools in Turkey. And what about the camel?

“Oh yeah, Laurent got up on his camel. We even found him some juice to get him.”

The diagnosis confirmed that nine-year-old Liu was the only child likely to reach adulthood with good eyesight.  The four children are pictured here balancing on a rope swing in Tanzania

The diagnosis confirmed that nine-year-old Liu was the only child likely to reach adulthood with good eyesight. The four children are pictured here balancing on a rope swing in Tanzania

The original plan was to start the flight in 2020, taking off in Russia and China, but Covid canceled that. So they set off, from Montreal, in March of this year.

While the couple is clearly in a comfortable position – Sebastian works in finance, and Edith in logistics – the trip was made possible when Sebastian’s company was bought, resulting in a one-time bonus payment. Edith calls it a “gift of life”.

We had some pretty bad numbers, so when this happened we felt really lucky. It has allowed us to do this on the scale that we do.

Edith and Sebastian had never heard of this rare condition before, but it was Mia’s night vision problems that led them to seek medical help.

She was walking through things, stumbling in the bedroom. She doesn’t seem to have a problem seeing things in the day, but at night there will be problems. Mia was our first child. We thought maybe the eyes are slower developing in children.

Sebastian, 45, Mia, 11, Leo, 9, Colin, 7, and Laurent, 4 pictured here as he strokes some antlers in Mongolia

Sebastian, 45, Mia, 11, Leo, 9, Colin, 7, and Laurent, 4 pictured here as he strokes some antlers in Mongolia

When she was six, they started searching for “night vision issues” on Google and reading about this case. After seeking help, they underwent a series of tests, and were shocked when the news broke. Retinitis pigmentosa cannot be cured – and the prognosis may seem grim.

Night vision problems usually lead to peripheral vision problems. The field of view is reduced. Sometimes the end result is complete blindness; Sometimes some sight is preserved. There is no way to know and no way to predict the path.

“And just because one of the children advances in a certain way, it does not mean that the others will follow,” their mother says. “It makes it difficult to plan everything.” Edith appears to be a very positive and down-to-earth character, but she admits that she was broke at first. “I collapsed,” she says. “Not in front of Mia, but in a side room.”

It took another year to confirm what she already knew: that this was affecting three of her children.

All three have problems already. In addition to night vision problems, they are sensitive to light and were advised to wear sunglasses. “Which we try to do as much as possible” – but it can be difficult in the evening due to their current problems with night vision.

This trip raised some additional issues—sand in their eyes in the desert, for example—but they are determined to get around them. “We have to make sure we have headlights with us if we go out in the evening.”

The bombing: Leo, nine, captured this behemoth in Tanzania.  The lion is the only child who does not have vision problems

The bombing: Leo, nine, captured this behemoth in Tanzania. The lion is the only child who does not have vision problems

What do children know about their condition? Mia was told when she was seven years old. “I had to have that conversation, and tell her she was going to go blind,” Edith says. Oh, that’s not fun, she said, and then she said nothing else. I thought she didn’t quite understand.

After a few days she came and said she should learn to keep her room tidy because when she couldn’t see she would need to have everything in the same place. Then I caught her practicing moving from room to room with her eyes closed.

Recently, Laurent has reached the “question stage”. He said to me: What does it mean to be blind? – And I realized he didn’t actually know. I explained it in terms of closing your eyes, but then he started thinking about it. He asked: How do I drive a car? How will I cross the road? Will my wife be blind? “You just answer their questions the best you can but, frankly, it’s mostly not a problem. They taught us how to deal with it.”

Colin wanted to sleep on a train or a boat

And children are amazed at their resilience, as is often the case. Mia says now: “This is in the future.” On a daily basis, it doesn’t bother them.

The gradual regression is a tricky thing to navigate. Edith says they wondered how well they should prepare their children for the next life with poor eyesight. Should they teach them braille, for example?

The answer was no. Braille is very hard to learn when you see, and we have no way of knowing if they need it. There are a lot of technological advancements in their phones too [for example, with audiobooks]. We just have to wait and see.’

Another parenting dilemma is managing expectations. Edith says one of the things she finds difficult is that Mia wants to be a surgeon when she grows up. Should we try to keep her away from that? But who am I to say she can’t?

The four children make friends with a family in Namibia.  Edith says another reason for the trip is to show her children the real world - and the unfairness of some of it

The four children make friends with a family in Namibia. Edith says another reason for the trip is to show her children the real world – and the unfairness of some of it

You couldn’t meet a more positive family that you could do though. Shared experience is convenience. Young boys are sure to be able to follow Mia’s very calm lead.

Edith says another reason for the trip is to show her children the real world – and the unfairness of some of that. We met families who had neither running water nor electricity. It showed them that people suffer on many levels and that we are incredibly fortunate. Yes, as a family we have challenges, but so does everyone else.

Their trip sounds like hard work (“We don’t stay in five-star luxury. It’s a lot of tents and buses”) but it’s also a blast.

Over the next six months they plan to travel to Malaysia, Thailand, Borneo, and hopefully to Cambodia. Any details still on their wish list? “Whales,” Edith laughs. “And a volcano – preferably alive, with lava, but I’m not sure how habitable that is.”