After three of their four children received a diagnosis of a rare genetic illness that will eventually cause them to lose their vision, a Canadian family took to exploring the world on a whirlwind year-long adventure.
In 2018 Edith Lemay and Sébastien Pelletier noticed that their oldest child, now-12-year-old Mia Lemay-Pelletier, was struggling to see at night and had her tested, only to be given the diagnosis of retinitis pigmentosa, which could cause her to become fully blind by her 30s. The next year, the couple had their three boys tested. The two youngest, Colin and Laurent, also have the rare disease. Leo, their second oldest, was given the all-clear.
The family of six took off from Quebec in March of this year after COVID delayed their planned 2020 journey, documenting their trip on the Instagram account Plein Leurs Yeux, or “In Their Eyes” in English. So far, they have been to Namibia, Turkey, Mongolia, Zambia, and Tanzania, with no plans to head back home for another six months. Their next stop at the end of August was a week in Indonesia.
Edith told CNN that the diagnosis for their two boys was the catalyst that made them decide to take the worldwide trip so their children would have a bank of visual memories in the future once they have lost their sight completely, especially as there is no known cure or treatment to slow down the disease’s progression.
“I thought, I’m not going to show [Mia] an elephant in a book; I’m going to take her to see a real elephant. And I’m going to fill her visual memory with the best, most beautiful images I can. With the diagnosis, we have an urgency. There are great things to do at home, but there’s nothing better than traveling,” Edith told the news outlet.
Part of the family’s trip involves ticking off the children’s bucket list items, from Laurent wanting to drink juice astride a camel to Mia simply wanting to go horseback riding.
Edith stated, “We don’t know fast it’s going to go, but we expect them to be completely blind by mid-life.”
Mia has known for five years about the condition she shares with her two younger brothers, but the boys have only recently started to ask their parents tough questions about their quality of life.
“My little one asked me, ‘Mommy, what does it mean to be blind? Am I going to drive a car?” Edith said. “He’s five. But slowly, he’s understanding what was happening. It was a normal conversation for him. But for me, it was heart-wrenching.”
“No matter how hard their life is going to be, I wanted to show them that they are lucky to have running water in their home and to be able to go to school every day with nice colorful books. They’re super curious. They easily adapt to new countries and new food. I’m very impressed with them.”