A Canadian family of six embarks on a one-year journey around the world before daughter of 12 and sons of seven and five lose their sight due to a rare genetic condition.
The parents discovered their eldest Mia Lemay-Pelletier had retinis pigmentosa — which could have left her blind by her thirties — after having trouble seeing at night in 2018. The following year, her brothers Colin and Laurent were diagnosed with the same disease. but the second born Leo got it all clear.
Mother Edith Lemay, who works in finance in Quebec, where the family is based, said that when the brothers were diagnosed, it was the catalyst moment for a trip around the world to fill their brains with “visual memories” before their eyesight deteriorated.
The family left in March for the holiday – which has no set itinerary – for which they have so far visited Namibia, Zambia, Tanzania, Turkey and Mongolia and are now spending a week in Indonesia. They had first planned to start in 2020 with a tour of Russia and China, but this was canceled due to the COVID pandemic.
Ms. Lemay said that in addition to giving her children a wealth of memories, she also wanted to show her children along the journey that no matter how difficult life is, they were lucky to have only running water at home and to go to school. go every day.
She shared about the trips on social media and said it was great seeing the kids get together, but admitted it was “hard work” to be with them 24/7. The youngest has already turned into a “question bomb,” she said, wondering if it might not be better to jump out of the bus window to escape.
Retinis pigmentosa is a rare genetic condition in which cells in the retina — the light-sensitive part of the eye — begin to break down. Symptoms normally first appear in childhood with problems seeing at night, with vision deteriorating over time in patients who gradually use their peripheral or central vision. There is no cure for the disease, and in some cases patients become blind by their 30s.
Pictured above are parents Edith Lemay (second from right) and Sebastian Pelletier (second from left) with their four children. Mia, 12, is on the far right. Also pictured are Leo, nine, Colin, seven, and Laurent, five. The family embarks on a one-year world tour after learning that three of the children have a rare genetic condition that will gradually deteriorate their eyesight.
The journey began in March 2022 when the family flew to Namibia from Canada. Above are the four children squeezing to protect their eyes from the sand
TANZANIA: Family also visited Tanzania to go on safari. While there they saw, among other things, elephants, cheetahs and hippos
MONGOLI: During the journey, they also traveled to Mongolia, where they stayed in tents and also rode camels in the Gobi Desert. Their mom said she wanted to show the kids with the trip that they were lucky with what they’re doing
The children are pictured above on their journey in Mongolia. They have now flown to Indonesia for the next leg of the tour. There is no route, their parents said, but they do have a bucket list of activities to complete, such as riding a camel
The mother also said that for every beautiful photo of her children, she has at least ten of them making a face or behaving badly. Pictured above is one of her sons making a face at a lookout point in Turkey
Mother Mrs. Lemay and father Sebastien Pelletier came up with the idea for the world holiday after their specialist suggested maximizing the ‘visual memories’ for the children.
In an interview with CNN Travelsaid Mrs Lemay: ‘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 nothing beats traveling.
The family had initially planned an overland trip through Russia and China to begin the holiday before July 2020, but these plans had to be shelved due to the global pandemic.
They toured eastern Canada in July of the following year as restrictions eased, but in March 2022 they finally embarked on their year-long journey beginning in Namibia. They left Mongolia for Indonesia last week and have no plans to return to Quebec for at least another six months.
They follow a bucket list of activities they want to try, from Mia saying she wanted to go horseback riding to Laurent saying he wanted to drink juice on a camel.
They were supposed to start the holiday in July 2020, but had to postpone the plans due to the COVID pandemic. However, in July of this year, they set out for the one-year journey (shown above, preparing to leave Quebec)
TURKEY: The children are shown here during their visit to an abandoned village in Turkey
MONGOLI: The family is above a cabin they visited
Sometimes the children bring up their diagnosis. Mia has known it since she was seven, while the youngest two only recently found out. For Leo it has always been a fact of life.
Mrs. 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 begins to understand what is going on. For him it was a normal conversation, but for me it was heartbreaking.’
The National Eye Institute, in the US, says retinis pigmentosa is a group of rare eye diseases caused by genetics that people are born with that cause visual cells to break down.
The first warning signs normally appear when people are children, having trouble seeing and bumping into things at night. But over time, vision will gradually deteriorate.
Most will lose their peripheral vision — seeing objects around the one they focus on — or central vision — area they see in the center of their vision. Some also go blind in their thirties.
The condition is normally diagnosed using a dilated eye exam to check how the retina is responding, or genetic swabs.
There is currently no cure for the condition, although experts say using low vision aids and training programs to rehabilitate to new eyesight can help.