The family left in March for the holidays and so far they have visited Namibia, Zambia, Tanzania, Turkey, Mongolia and are now going to spend a week in Indonesia. (Credit: Reproduction/Internet)
A Canadian family of six embarked on a year-long trip around the world before their daughter, 12, and sons, seven and five, lost their eyesight to a rare genetic condition.
Parents discovered that their oldest daughter, Mia Lemay-Pelletier, had retinis pigmentosa — which could make her blind in her 30s — after she began struggling to see one night in 2018. The following year, her brothers Colin and Laurent were diagnosed with the same disease.
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Mum Edith Lemay, who works in finance in Quebec, where the family resides, said that when the siblings 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 a vacation – without a defined itinerary – and so far they have visited Namibia, Zambia, Tanzania, Turkey, Mongolia and are now going to spend a week in Indonesia. They had planned to start with a tour of Russia and China in 2020, but that was canceled by the Covid pandemic.
Lemay said that in addition to giving her children a rich bank of memories, she also wanted to show her children during the trip that no matter how difficult life is, they were lucky enough to have running water in their home and be able to go. to school every day.
Recounting the trips on social media, she said it was wonderful to see the kids getting together, but admitted it has been ‘hard work’ being with them 24/7.
Retinis pigmentosa is a rare genetic condition in which cells in the retina – the light-sensitive part of the eye – begin to break down. Its symptoms typically first appear in childhood with vision problems at night, with vision worsening over time with patients gradually using their peripheral or central vision. There is no treatment for the disease, and in some cases, patients go blind by age 30.
Mum Lemay and dad Sebastien Pelletier came up with the idea of the world vacation after their doctor suggested they should maximize “visual memories” for children.
They took a trip through eastern Canada in July last year when restrictions eased, but in March 2022 they finally set out on their year-long trip starting in Namibia. Last week, they left Mongolia for Indonesia and have no plans to return to Quebec for at least another six months.
They’ve been following a list of activities they want to try, from Mia saying she wants to ride a horse to Laurent saying he’d like to drink juice on a camel.
Sometimes children bring their diagnosis. Mia has known this since the age of seven, while the two youngest only found out more recently.
‘My little one asked me, ‘Mommy, what does it mean to be blind? Am I going to drive a car?’ He has five. But slowly, he is understanding what is happening. It was a normal conversation for him, but for me it was heartbreaking, the children’s mother reported.
Most people with this disease will lose their peripheral vision – seeing objects around what they are focusing on – or central vision – the area they see in the center of their vision. A Department of Health and Human Services study says that some become “virtually blind” by age 30, while others may have “useful vision” after age 80.
The condition is usually diagnosed using a dilated eye exam to see how the retina responds, or genetic swabs.
There is no cure for the condition at the moment, although experts say the use of low vision devices and training programs to rehabilitate the new vision can help.
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