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Heartbreaking, inspiring… the family who went to see the world before their children go blind
- Edith Lemay, 44, is on a ‘making visual memories’ adventure with her family
- Three of Edith’s four children are slowly going blind from retinitis pigmentosa
- Edith and her husband resolved to fill their children’s young minds with as many unforgettable images as possible
Like so many mums, Edith Lemay is a tad photoobsessed. During the epic family holiday she is now on, she has taken thousands of pictures.
She sends me a file with the edited highlights. It contains nearly 400 photographs — wonderful images of not only her children’s wide smiles, but of glorious sunsets, waterfalls, wildlife, rainbows. The best you can see of the world, basically.
‘I take a lot of pictures,’ she admits. ‘I’m a little crazy on that side, but it’s my way of coping. I want to capture every single part of this trip so that my children will be able to see the pictures for as long as possible.
‘Looking at photographs only requires a small field of vision. It’s about building that memory, on top of what they actually see — the hard disk of their memories, in a way.’
Edith Lemay, 44, is on a ‘making visual memories’ adventure with her family. Her four children are pictured here at the cliffs in Mongolia
You may have gathered that this is no ordinary family holiday. Edith, 44, her husband Sebastian, 45, and their four children are on what she calls a ‘making visual memories’ adventure.
In short, they are seeing the world in the most literal sense — and while they still can, because three of Edith’s four children are slowly going blind.
In 2018 their eldest child, Mia, now 11, was diagnosed with retinitis pigmentosa, a cruel condition which causes visual cells to break down, gradually stealing the eyesight. The condition is genetic, although the defective genes responsible had never made their presence known in the wider family before.
‘We were both carriers, without us knowing,’ says Edith. ‘There was no history in either family. They told us we had a one-in-four chance of transmitting this to our children. Unfortunately, we got three out of four.’
Canadian family-of-four takes world trip after sons, 7 and 5, and daughter, 11, are diagnosed with rare genetic condition that will make them blind by mid-life. They are pictured here in Turkey
By the time the family realised what they were dealing with — that Mia was already on a trajectory towards blindness — their two youngest sons, Colin, seven, and Laurent, five, were also showing symptoms.
‘As soon as they told us Mia had it, I knew my two youngest children had it, too,’ says Edith.
The diagnosis confirmed that Leo, nine, was the only child likely to reach adulthood with his vision intact. They found themselves in a distressing situation, of course, but after the initial shock and denial (‘I think it was like the stages of grief,’ Edith admits), this remarkable couple resolved to fill their children’s young minds with as many unforgettable images as possible.
And real images — from life, not ones from books or the internet. ‘It really was a case of, “Why look at an elephant in a book when we can go and see the real thing.” ’ Edith says.
A trip of a lifetime was planned. They sat down with their children and asked them where in the world they would like to go and, more pertinently, what they would like to see there. The results were charming, and a little unexpected. ‘We drew up a bucket list, not so much about the countries or the places, but about activities.’
What did they really want to do? ‘Mia is horse-mad so she wanted to ride horses. Colin wanted to sleep on a train or a boat. Laurent, the little one, was a bit too young to understand but he made us laugh. He wanted to drink juice while sitting on a camel.’
Off they went, to find a camel. And the rest. They rented out their house for a year and did that thing most people dream of but rarely do (or can rarely afford to do) and just took off.
Edith and her husband resolved to fill their children’s young minds with as many unforgettable images as possible. The family in Mongolia. Laurent, five, wanted to drink juice while riding a came
Since they departed their native Canada six months ago, the family have visited Namibia, Zambia, Tanzania, Turkey, Mongolia and Indonesia. When I catch up with Edith they are in Bali, around halfway through their trip.
What have they seen so far? Perhaps the better question would be, what haven’t they seen? Wildlife ticked off the list includes elephants, giraffes, zebras and cheetahs, most seen on safari in Africa. ‘We saw a giraffe on our first day. Laurent said: “Is it real?”’
Mia got to ride her wild horses — in Mongolia. They have also slept in a yurt, taken a hot-air balloon, pitched their tents in the Gobi desert and swum in thermal pools in Turkey. And the camel?
‘Oh yes, Laurent got on his camel. We even found him some juice to have on it.’
The diagnosis confirmed that Leo, nine, was the only child likely to reach adulthood with his vision intact. The four children are pictured here balancing on a rope swing in Tanzania
The original plan had been to start the trip in 2020, kicking off in Russia and China, but Covid scuppered that. So they set off, from Montreal, in March this year.
While the couple are clearly comfortably off — Sebastian works in finance, Edith in logistics — the trip was made possible when Sebastian’s company was bought out, leading to a one-off bonus payment. Edith calls it their ‘gift from life’.
‘We’d had some pretty bad numbers, so when this happened we felt really blessed. It allowed us to do this on the scale we are doing it.’
Edith and Sebastian had never even heard of this rare condition before, but it was issues with Mia’s night vision that led to them seeking medical help.
‘She would walk into things, stumble in the bedroom. She didn’t seem to have a problem with seeing things in the day, but at night there would be issues. Mia was our first child. We thought maybe the eyes were slower to develop in children.’
Sebastian, 45, Mia, 11, Leo, 9, Colin, 7, and Laurent, 4 pictured here stroking some antlers in Mongolia
When she was around six, they started Googling ‘night-vision issues’ and read of this condition. After seeking help, they went through a series of tests, and were devastated when the news was broken. Retinitis pigmentosa is not treatable — and the prognosis can sound bleak.
Problems with night vision usually lead to issues with peripheral vision. The field of vision shrinks. Sometimes the end result will be complete blindness; sometimes some sight is retained. There is no way of knowing, and no way of predicting the path.
‘And just because one child progresses in a certain way, it does not mean that the others will follow,’ says their mum. ‘It makes everything hard to plan for.’ Edith seems a very positive, pragmatic person, but admits she went to pieces at the start. ‘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 issues already. As well as problems with night vision, they have sensitivity to light and have been advised to wear sunglasses. ‘Which we try to do as much as possible’ — but it can be difficult in the evening because of their existing issues with night vision.
This trip has thrown up a few extra issues — sand in their eyes in the desert, for instance — but they have been determined to get round them. ‘We do have to make sure we have headlamps with us if we go out in the evening.’
Shelling out: Leo, nine, got to grips with this giant in Tanzania. Leo is the only child who doesn’t have sight problems
What do the children know about their condition? Mia was told when she was seven. ‘I had to have that conversation, telling her that she was going to go blind,’ says Edith. ‘She said: “Oh, that isn’t fun,” and then didn’t say anything else. I thought she didn’t quite understand.
‘A few days later she came in and said she would have to learn to keep her room tidy because when she can’t see, she’ll need to have everything in the same place. Then I caught her practising going from room to room with her eyes closed.’
More recently, Laurent has reached the ‘questions stage’. ‘He asked me: “What does being blind mean?” — and I realised he didn’t actually know. I explained it in terms of having your eyes closed, but then he started to think about it. He asked: “How will I drive a car? How will I cross the road? Will my wife be blind?” You just answer their questions as best you can but, honestly, it mostly isn’t an issue. They have taught us how to handle it.’
And the children are astonishing in their resilience, as children often are. ‘Mia now says: “That’s in the future.” On a day-to-day basis, it doesn’t bother them.’
The gradual decline is a tricky thing to navigate. Edith says they have wondered how much they should be preparing their children for life ahead with visual impairment. Should they be teaching them Braille, for instance?
‘The answer was no. It’s very difficult to learn Braille when you can see, and we have no way of knowing if they will need it. There are so many technological advances with their phones, too [for example, with audiobooks]. We just have to wait and see.’
Another parenting dilemma is managing expectations. Edith says that one of the things she has found difficult is that Mia wants to be a surgeon when she grows up. ‘Should we try to steer 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 was to show her children the real world — and the unfairness of some of it
You couldn’t meet a more positive, can-do family though. The shared experience is a comfort. Certainly, the younger boys are able to follow Mia’s very calm lead.
Edith says another reason for the trip was to show her children the real world — and the unfairness of some of it. ‘We have met families who have no running water, no electricity. It has shown them that people are suffering on a lot of levels and that we are incredibly lucky. Yes, as a family we have challenges, but so does everyone.’
Their trip sounds hard work (‘We are not staying in five-star luxury. It’s very much tents and buses’) but also a blast.
Over the coming six months they plan to travel to Malaysia, Thailand, Borneo and, hopefully, Cambodia. Any specifics that are still on their bucket list? ‘Whales,’ laughs Edith. ‘And a volcano — preferably a live one, with lava, but I’m not sure how viable that is.’
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