See the world before losing sight. This has been the crazy project of a Canadian family for several months. Originally from Toronto, the family flew in March to go around the world for a year.
Edith and Sébastien have four children. A few years ago, her oldest daughter, Mia, was diagnosed with retinitis pigmentosa. A few months later, the family learns that Colin and Laurent, ages 7 and 5, also have the rare genetic disease.
“It is a degenerative disease of the retina and little by little they will lose their sight. It was obviously a shock to me,” the mother tells BFMTV.
“Looking at the world through a straw”
This very rare disease affects approximately one in 5,000 people worldwide and is incurable. Reduces the visual field during life.
“Towards the end, they say it’s like looking at the world through a straw. It can go very fast or very slow, you really don’t know how long it’s going to take,” explains the mother. .
“Fortunately with my children, it seems that it is quite gradual, it is not very fast. At the moment, his vision is good during the day, but as soon as the light goes down, they go completely blind.”
When she finds out that her children will lose their sight, the Canadian leaves in search of solutions. “I looked for tools to help them live with this disease. One of the ideas was for them to learn brail, but they told me it was too early, a worker told me to fill in the visual memory of it. And that’s something I can do.”
“A little push of life”
But both parents want to go beyond showing pictures in books. “I said to myself, I really want to go see elephants in real life. I’m going to fill your 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 find “a little help from life”.
The company where Sébastien works is bought, “since he had shares in the company, he makes us a good amount of money to be able to go on a trip”.
Namibia, Zambia, Tanzania…
The two parents and four children were due to leave in July 2020, but the Covid pandemic decided otherwise. By dint of patience and reorganization, they managed to leave last March 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, who share each stage of their journey on social media, then leaves for Turkey and Mongolia. At this time, they have put their bags 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 their children’s incurable disease.
“Here, unannounced, Laurent just asked the question that hurts: ‘What does it mean to be blind? I knew it was coming, but we’re never really ready, even if it’s the third time,” they write on Facebook. .
But beyond the questions, Edith also talks about the pleasure of traveling with her children. “As kids, they’re in the moment. The little things are going to surprise them. You can come 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 in house
Regarding the organization, the four children attend school with their parents. “We really do the basics: French and math, since they are only going away for a year. We focus on the core subjects, especially since they will learn a lot 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 decide “calmly” future destinations.
Edith, Sébastien and the four children, now halfway through their journey, are currently enjoying the Balinese beaches. They plan to stay in Indonesia for about two months to discover the islands of Lombok, Gili and Komodo.
“Then we’ll go up to Malaysia and Southeast Asia, but after that, it gets a little more vague,” the mother rejoices. Many adventures to follow on social networks.
Source: BFM TV
