the girl Mia was only 3 years old when Canadian couple Edith Lemay and Sébastien Pelletier first noticed that she had vision problems.

A few years after taking her to a specialist for the first time, Mia, the eldest of their 4 children, was diagnosed with retinitis pigmentosaa rare genetic condition that causes vision loss or decline over time.

Until then, Lemay and Pelletier, who had been married for 12 years, had noticed that two of their children, Hakewho is now 7 years old, and Lawrenceout of 5 had the same symptoms.

Their fears were confirmed when in 2019 the boys were diagnosed with the same genetic disorder. their other son Leonow 9 years old, does not have the condition.

“There’s really nothing you can do,” says Lemay, explaining that there is currently no effective cure or treatment to slow the progression of retinitis pigmentosa.

“We don’t know how fast it will go, but they may be completely blind in middle age”.

As they got used to the news, the couple focused their attention on helping their children learn the skills they would need to navigate life.

When Mia’s specialist suggested they provide her with “visual memory”, Lemay realized that there was a really amazing way to do this for their children.

“I said to myself, I’m not going to show him an elephant in a book, I’m going to take him to see a real elephant,” explains Lemay. “I will fill your visual memory with the best and most beautiful photos that I can”.

She and her husband soon began planning to spend a year traveling the world with their children.

While Lemay and Pelletier often traveled together before becoming parents, and having taken their children on several trips, were leaving for a long family trip didn’t seem viable before.

“With the diagnosis, we have an emergency,” adds Pelletier, who works in finance. “There are great things to do at home, but there’s nothing better than traveling.

They soon started trying to save money and their travel pots got a timely relaunch when buying the company where Pelletier worked and held shares.

“It was like a gift of life,” admits Lemay, who works in healthcare logistics. “It’s like, here’s the money for your trip.”

They had to postpone the trip due to restrictions caused by the coronavirus pandemic and revised the itinerary several times. When they finally left Montreal in March 2022they had few plans in place.

“We actually left without an itinerary,” says Lemay. “We had ideas of where we wanted to go, but we planned as we went.”

According to the National Eye Institute, part of the Institute of Health, an agency of the Department of Health and Human Services, symptoms of retinitis pigmentosa usually start in childhoodand most people end up losing a lot of their vision.

Three of Edith Lemay and Sébastien Pelletier’s four children have a rare genetic disease that causes vision loss or decline over time. So the Canadian family is traveling the world now to store “visual keepsakes” for later. https://t.co/RGfNQiVOpO

—CNN (@CNN) September 12, 2022

Fonte: CNN