‘Showing the beauty of the world’: A family travels around the world before their children go blind

Before their children lose their sight due to a rare genetic disease, a Canadian family sets out to travel around the world. The mother, Edith, tells BFMTV.

See the world before losing your sight. This has been the crazy project of a Canadian family for several months. Originally from Toronto, the family flew away in March for a trip around the world for a year.

Edith and Sébastien have four children. A few years ago, their eldest daughter, Mia was diagnosed with retinitis pigmentosa. A few months later, the family learns that Colin and Laurent, aged 7 and 5, also have the rare genetic disease.

“It’s a degenerative disease of the retina and they will gradually lose their sight. It was obviously a shock for me”, tells the mother to BFMTV.

“Looking at the world through a straw”

This very rare disease affects approximately one in 5,000 people worldwide and is incurable. It reduces the visual field during life.

“Towards the end, they say it’s like looking at the world through a straw. It’s something that can go very quickly or very slowly, you don’t really know how long it’s going to take,” explains the mum. .

“Fortunately with my children, it seems to be quite gradual, it’s not very fast. For the moment, their vision is good during the day, but as soon as the light goes down, they become completely blind.”

When she learns that her children will lose their sight, the Canadian sets out in search of solutions. “I looked for tools to help them live with this disease. One of the ideas was to have them learn brail, but I was told it was too early, a worker told me fill their visual memory. And that’s something I can do.”

“A little boost of life”

But both parents want to go further than showing pictures in the books. “I said to myself, I really want to go see elephants in real life. I’m going to fill their visual memory with the beauties of the world”, says Edith.

A year later, the family plans to go around the world. The idea is to “show the beauties of the world” to the three children, before they lose their sight. The two parents organize themselves financially, save and come across “a little help from life”.

The company in which Sébastien works is bought, “as he had shares in the company, it makes us a good little amount of money to be able to go on a trip”.

Namibia, Zambia, Tanzania…

The two parents and the four children were to leave in July 2020, but the Covid pandemic decided otherwise. By dint of patience and reorganization, they managed to leave last March, heading for Namibia. Then Zambia and Tanzania.

“We really crossed Africa from East to West, with trains and buses, it was a great adventure,” rejoices the Canadian.

The small troop, which shares each stage of its journey on social networks, then leaves for Turkey and Mongolia. At this time, they have put their suitcases on the island of Bali in Indonesia.

Questions

In addition to sharing their photos, their experiences, and their encounters, the parents share their questions about the incurable disease of their children.

“Here, without warning, Laurent has just asked the question that hurts: “What does it mean to be blind? I knew it would come, but we’re never really ready, even if it’s the 3rd time”, write they on Facebook.

But beyond the questions, Edith also talks about the pleasure of traveling with her children. “Being kids, they’re in the moment. The little things are going to amaze them. You can get to a beautiful tourist spot and they’re going to roll in the sand,” she laughs. “We also see the world through their eyes.”

school at home

In terms of organization, the four children attend school with their parents. “We really do the basics: French and maths since they are only leaving for a year. We focus on the essential subjects, especially since they will learn so much during the trip”.

And for the trip, Edith can count on her husband, an “extraordinary planner”. The trip is planned a month in advance, “not everything is planned with the restrictions that change all the time”, she says. A plan that allows you to “quietly” decide on future destinations.

Edith, Sébastien and the four children, who are already halfway through their trip, are currently enjoying the Balinese beaches. They plan to stay about two months in Indonesia to discover the Lombok, Gili and Komodo islands.

“Then, we will go up to Malaysia and Southeast Asia, but after that, it becomes a little more vague”, rejoices the mother. Many adventures to follow on social networks.

Angele Chatelier and Pauline Boutin

‘Showing the beauty of the world’: A family travels around the world before their children go blind