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Family set off on round the world trip before three children lose their vision to rare genetic condition

Rhiannon Ingle

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Family set off on round the world trip before three children lose their vision to rare genetic condition

A family of six set off on a once-in-a-lifetime world trip, just before three of the children became blind due to a rare genetic condition.

Setting sail for a year-long trip, Edith Lemay and Sebastien Pelletier wanted to fill their children's memories 'with the most beautiful images' whilst they still had their sight.

The genetic condition in question, referred to as retinis pigmentosa, has since been diagnosed in three out of the Canadian couple's four children.

The condition is a chronic hereditary eye disease characterised by black pigmentation and gradual degeneration of the retina - leading to a slow deterioration of the sight which can leave many sufferers totally blind by the time they reach their thirties.

The family wanted to see the world. Credit: @pleinleursyeux/Instagram
The family wanted to see the world. Credit: @pleinleursyeux/Instagram

The parents' eldest, daughter Mia, twelve, along with their sons, Colin and Laurent, aged seven and five, were all diagnosed with the condition within a year of each other back in 2019.

Lemay's second-born, Leo, however, was not diagnosed unlike his three other siblings.

Based in Quebec, Lemay found that upon her sons' diagnoses, she wanted to take the chance while she still could to fill their minds with 'visual memories'.

In an interview with CNN Travel, the mother of four stated: "There's nothing you can really do," referring to the current lack of cure or effective treatment for retinitis pigmentosa.

Three of the children lost their sight due to a rare genetic disorder. Credit: @pleinleursyeux/Instagram
Three of the children lost their sight due to a rare genetic disorder. Credit: @pleinleursyeux/Instagram

"We don't know how fast it's going to go, but we expect them to be completely blind by mid-life," she added.

When told by Mia's specialist to give her a whole archive of 'visual memories' - Lemay and her partner made the bold move in planning their world trip.

"I thought, 'I'm not going to show her an elephant in a book, I'm going to take her to see a real elephant," Ms Lemay explained.

She continued: "And I'm going to fill her visual memory with the best, most beautiful images I can."

While their original plans to begin the world trip were foiled by the pandemic in 2020, the family were finally able to start their trip in March of this year - with the first destination on their extensive itinerary being Namibia.

The family explore an abandoned village in Turkey. Credit: pleinleursyeux/Instagram
The family explore an abandoned village in Turkey. Credit: pleinleursyeux/Instagram

The brigade of six aren't just globe-trotting though, as they're also finding the time to tick off as many items on their bucket list as possible - from horse-riding to exploring abandoned villages.

Father Sebastien Pelletier said: "With the diagnosis, we have an urgency. There's great things to do at home, but there's nothing better than traveling.

"Not only the scenery, but also the different cultures and people," he noted.

With no plans to return home in Quebec for at least half a year, the family recently enjoyed their travels last week in Indonesia from Mongolia.

Featured Image Credit: Edith Lemay/Facebook

Topics: News, World News

Rhiannon Ingle
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