After a devastating diagnosis, this family is taking the trip of a lifetime.
Three of Sebastien Pelletier and Edith Lemay’s four children have a rare genetically inherited condition called retinitis pigmentosa.
It leads to a gradual degeneration of the retina, the light-sensitive tissue at the back of the eye. People with the condition gradually lose their sight and the speed of their vision loss can vary dramatically.
So Sebastian and Edith have embarked on a family adventure to see and experience the wonders of the world before it’s too late.
Why did the family decide to travel around the world?
Mia, now 13, was diagnosed with retinitis pigmentosa at the age of three after her parents noticed how clumsy she was, especially at night. Seven-year-old Colin and five-year-old Laurent were also later diagnosed with the condition. Only Leo, their second eldest child, is unaffected.
“It’s kind of a blow, where you can’t believe it. Then you try to say ‘this can’t be happening to us’ then you get mad, etcetera,” says Sebastien.
“So, it’s a whole process of trying to get over something that’s bad and try to transform it into something that’s not necessarily better but is normal and is part of life.”
After a specialist suggested they help prepare the children by showing them photos of places, animals and landscapes, the family decided to do one better.
“I decided that, OK, I’m not going to show her elephants and giraffes in books, I’m going to go show her in real life… and fill their memory with as much beautiful things as we could,” Edith explains.
And so began their round-the-world trip.
Building memories that will last a lifetime
Sebastien and Edith chose the destinations but the children also got a say in the planning.
“We did a bucket-list of activities they wanted to do on the trip, so we had horseback riding; we had learning to surf; sleeping on a train. Laurent actually wanted to drink juice on a camel for some odd reason. We thought it was really funny. He was four at the time but he was adamant — ‘I want to drink juice on a camel,’” says Edith.
They set out a year ago and have so far been to 10 countries. Most recently they went to Bangkok, Thailand, where they visited ancient cultural sites and glittering riverside temples. Next on the list is Nepal.
Soon the children will return to regular schooling in Canada after almost a year of travel. The sights and sounds of their trip will become memories but ones their parents hope will last a lifetime.
Watch the video above to see the family travel around the world.
Video editor • Maxime Caron