Mum’s desperate bid to fill her 3 kids’ heads with ‘beautiful memories’ before they ALL go blind
WE usually leave those big, once-in-a-life-time trips to later in life, when we have both the money and the time.
But for one young family of six, their year-long world tour has begun ahead of schedule, as three of the four children are soon to lose their vision due to a rare genetic condition.
Parents Edith Lemay and Sebastien Pelletier made the decision to embark on the huge trip to fill their kids' minds "with the most beautiful images" before their sight deteriorated.
The Canadian family discovered that their eldest child, 12-year-old Mia Lemay-Pelletier, had retinis pigmentosa in 2018 after she started struggling to see in the evenings.
The debilitating condition is likely to leave her completely blind by the time she turns 30.
Just one year later, Mia's brothers Colin, 7, and Laurent, 5, were diagnosed with the same disease, while second-oldest Leo, 9, got the all clear.
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"There's nothing you can really do," Edith, who works in finance in Quebec where the family is based, told .
"We don't know how fast it's going to go, but we expect them to be completely blind by mid-life."
There is currently no cure or effective treatment to slow down the progression of retinitis pigmentosa.
Once the couple had come to terms with the heartbreaking news, they decided to focus their attentions on ensuring their kids were well equipped for their potentially more challenging futures.
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One day, Mia's specialist suggested the family try to engross her with "visual memories," before she loses her sight for good.
This inspired Edith to and her husband to start making plans to spend a year travelling around the globe with their kids.
"I thought, I'm not going to show her an elephant in a book, I'm going to take her to see a real elephant," she explained.
"And I'm going to fill her visual memory with the best, most beautiful images I can," she said.
Dad Sebastian added: "With the diagnosis, we have an urgency."
"There's great things to do at home, but there's nothing better than traveling.
"Not only the scenery, but also the different cultures and people," he added.
They soon began building up travel savings, with their pot receiving a welcome boost from the company that Edith worked for.
After Covid put their international travel plans on hold - which were meant to begin in 2020 - the family began their trip around eastern Canada in July the following year as restrictions eased.
In March 2022 the family finally set off on their international year-long trip, starting in Namibia.
Last week they headed to Indonesia from Mongolia, and have no plans to go back to Quebec for at least another six months.
They are following a bucket list of activities which the kids have created - with activities ranging from horse riding to drinking juice on a camel.
The family have been chronicling their trip via social media, posting regular updates on theirand accounts.
While the family plan to return home to Quebec next March, they say they're trying not to think that far ahead.
In fact, the ability to live in the moment is one of the key things the family have learned over the past few months.
"This trip has opened our eyes to a lot of other things, and we really want to enjoy what we have and the people that are around us," said dad Sebastien.
Sebastien stressed that they remain hopeful that Mia, Colin and Laurent may never go blind.
But for the time being, they are doing everything they can to ensure that they can handle whatever the future may hold.
"Hopefully, science will find a solution," said Sebastien.
"We cross our fingers for that. But we know that it might happen, so we want to make sure our kids are equipped to face these challenges," he added.
What is retinitis pigmentosa?
Retinitis pigmentosa is a genetic disorder that affects the eyes and causes loss of vision.
It’s inherited from parents and symptoms include difficulty seeing in the dark and a decreased peripheral vision.
The earlier symptoms are usually spotted in childhood, and as the condition gets worse, the retinal cells stop working and eventually die, meaning that your eyes cannot process the light that enters it.
According to the NHS, it affects around one in every 3,000-4,000 people.
Can it cause total blindness?
While complete blindness is uncommon, the condition does steadily worsen, causing more severe sight loss.
The age at which symptoms start varies, but the deterioration is generally very slow, and often takes years.
After night and peripheral vision has been affected, it tends to affect reading, colour and central (straight-ahead) vision.
How is it treated and is there a cure?
At the moment, there is no cure for retinitis pigmentosa, but there are a number of treatments to slow down the progression of the disease.
Mobility training can teach people to use a cane or guide dog, and there are special glasses lenses to magnify central vision.
