See the world before losing your sight. It’s the crazy project of Canadian parents who want to show their children all the wonders of the world before they go blind.
When their daughter, Mia, was three years old, these young parents learned that she had a rare genetic condition that could make her blind: pigmentary retinopathy. A few years later, the Quebec couple realizes that two of their sons, Colin and Laurent, have the same symptoms. Their fears are confirmed in 2019 and the diagnosis falls: they have the same disease.
Edith Lemay and Sébastien Pelletier then decided to set up an ambitious travel project in order to create “visual memories” for their children: they embarked on the realization of the world tour. The family has already been able to visit Turkey, Mongolia and more recently Indonesia.
An incurable disease
Mia (11 years old), Colin (7 years old) and Laurent (5 years old) suffer from retinopathy pigmentosa, a rare disease that affects approximately 1 in 4000 births worldwide and which is incurable. Only Leo (9 years old) seems to have been spared. This serious hereditary disease causes a progressive degeneration light-sensitive cells in the retina, the photoreceptors. It causes visual impairment which can be major and lead to blindness. The people concerned therefore gradually lose their sight with a narrowing of the visual field and an loss of night vision.
“It’s unclear how fast it’ll go, but they’re expected to be completely blind by midlife.“, confides Edith to CNN.
The world through their eyes
After the news broke, the parents decided to carry out a crazy project: 1 year of travel across the globe to fill the visual memory of their children with the best and most beautiful images they can give them. “I thought, ‘I’m not going to show him an elephant in a book, I’m going to take him to see a real one.‘” says the mother. While they had already gone abroad before the birth of their children, they had not dared to do so since.
Thus, the couple began to save and then received an unexpected boost when the company for which Sébastien worked and in which he had shares was bought out. However, they were forced to postpone their project with the Covid crisis and planned their itinerary differently following the health restrictions of the various countries. In March 2022, the adventure begins. “We actually left without a real itinerary”, admits Edith. “We had ideas of where we wanted to go but we plan as we go, a month in advance“, she explains to CNN.
Namibia, Zambia, Tanzania… and the school in all this?
After its big departure, the small troop shares each stage of its journey on social networks. At this time, they have dropped off their suitcases on the island of Bali in Indonesia and the mother reveals: “We really try to show them things they wouldn’t have seen at home and give them the most amazing experiences.”.
In order to continue their studies, the four children attend school with their parents, at home and on the road. “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”. Indeed, during this unique experience one can be confronted with the fatiguethe frustration. “So there’s a lot you can learn from the trip itself.”.