'A quest to fill their visual memory': Family sets out on world tour before their 3 children go blind from rare genetic disease
QUEBEC, CANADA: A family of six from Canada sets out on a year-long journey around the globe before a daughter, aged 12, and sons, 7, and 5 lose their vision due to a rare genetic condition. After their oldest child, Mia Lemay-Pelletier began having difficulty seeing in the evenings in 2018, her parents learned that she had retinitis pigmentosa, a condition that could cause her to go blind by the time she is 30. The disease was discovered in her brothers Colin and Laurent the following year, but second-born Leo was unaffected.
When the brothers were diagnosed, their mother Edith Lemay, a finance professional in Quebec where the family resides, said, it was the impulse for a global journey to give their brains "visual memories" before their sight deteriorated. The family left for their unplanned trip in March 2022 and has since visited Namibia, Zambia, Tanzania, Turkey, and Mongolia, and is currently spending a week in Indonesia. The COVID pandemic forced them to abandon their initial plan to start in 2020 with a journey through Russia and China.
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Mother Lemay documented the journey on social media and said it had been wonderful to see the kids bond, but she also admitted that being with the kids all the time had been "hard work." She claimed that the youngest had already developed into a "question machine gun," which made her consider whether it might be preferable to jump out the bus window in order to get away. Her page 'Plein Leurs Yeux' on Instagram reads, "3 kids going blind. A quest to fill their visual memory😍. A year of travel around the world. Let’s see the beauty of our world!"
In addition to providing her children with a wealth of memories, Ms Lemay said she also wanted to convey to them through the trip that, despite how difficult life may be, they are fortunate to have access to running water in their homes and the ability to attend school each day.
After their specialist advised them to focus on creating as many "visual memories" for the kids as possible, Lemay and her husband Sebastien Pelletier came up with the idea for the global vacation.
The mother during an interview with CNN Travel said, "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." She added, "With the diagnosis, we have an urgency. There are great things to do at home, but there's nothing better than traveling."
The family left for Indonesia last week after beginning their year-long trip in Namibia, and they don't have any immediate plans to return to Quebec for at least another six months. They are checking off experiences they want to try, from Mia wanting to ride horses to Laurent wanting to sip juice while riding a camel.
The children occasionally discuss their diagnosis. The youngest two were only made aware of it more recently, while Mia has known about it since she was seven years old. It has always been a "fact of life" for Leo. Lemay said, "My little one asked me, 'mommy, what does it mean to be blind? Am I going to drive a car?' He's five. But slowly, he's understanding what's happening. It was a normal conversation for him but, for me, it was heart-wrenching."
Retinitis pigmentosa is a rare genetic disorder in which the retina's light-sensitive cells start to degenerate. The condition's symptoms typically start in childhood with difficulty seeing at night. Over time, sufferers' vision progressively deteriorates and they begin to use either their peripheral or their central vision. The condition has no known cure, and some patients become legally blind by the time they reach their 30s.