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Parents take 3 children around the world to create visual memories before they lose their eyesight

Published May 17, 2023 8:05 pm

A loving parent will do anything for their children, including taking them on a trip to see beautiful sights around the world before they eventually lose their vision caused by a crippling genetic disorder.

It was a severe shot to the heart when parents Edith Lemay and Sebastien Pelletier learned that three of their four children—12-year-old Mia, 7-year-old Colin and 5-year-old Laurent—were diagnosed with retinitis pigmentosa, a rare eye disease that causes total vision loss.

According to the National Eye Institute, retinitis pigmentosa makes cells in the retina break down slowly over time, causing vision loss. It is a disease that people are born with and symptoms usually arise in their childhood years.

This disorder is what led Edith and Sebastien to make the decision of spending the past year traveling the world together with their children and letting them marvel at as many sights as possible before their vision is eventually taken away by the disease.

In an interview with GMA3, Edith and Sebastien shared that when they first learned the news, it was like their world had crumbled, especially since Edith said that no one in her family had been previously recorded with retinitis pigmentosa.

“At first it’s denial, you think it’s impossible. Nobody in my family has that. And then you get angry. Why me? Why does this happen to me? It’s not fair. And then comes sadness, you feel sorry for yourself, for your family," she said.

She went on, "It's only when you get to acceptance, when you accept that your children’s path is going to be different, that’s when you start thinking about the future and make real plans."

When asked about how they came up with the trip, Sebastien said that they initially wanted them to learn braille, but that the specialist did not recommend it for the time being as the children can still see well.

Instead, they were advised to fill their visual memory.

"You can show them books about giraffes or elephants or things like that. [Me and my wife] looked at each other and we said, 'We should go see the real thing, have them smell and feel all these animals and all these visual memories.' For us, it was just an obvious thing. Let’s take them around the world and go all in," Sebastien said.

During their travels, the children have all gathered some wonderful sights that they'll forever treasure in their hearts.

Mia, the eldest, told the news anchors, "My favorite moment was when I rode the hot air balloon in Turkey. It was just magical and amazing."

Out of the siblings, the only one who wasn't affected with the disease is 10-year-old Leo. He confessed that he had mixed feelings about the condition of his siblings, saying, "I feel lucky that I don’t have it, but sad that my brothers and sister will lose their vision."

Retinitis pigmentosa cannot be cured, but low vision aids and rehabilitation programs can help people with the disease make the most of their vision, according to the National Eye Institute.