From driving noisy dune buggies by way of the Gobi desert, to watching in awe as a lion slowly savoured its prey on a Namibian safari, the Lemay-Pelletier household are on the journey of a lifetime.
For the final six months, Edith Lemay and Sebastien Pelletier have been travelling the world with their 4 kids. However this isn’t an peculiar journey for the household of six. The mother and father need their children to see unforgettable websites, earlier than three of the 4 go blind.
“I mentioned to myself, ‘I’m not going to indicate them an image of an elephant, I’m going to indicate them an actual elephant, actual giraffes,’” Lemay mentioned over the cellphone from Bali. “I need to present them how stunning the world is, in order that’s what we’re doing proper now.”
Lemay mentioned they began noticing their eldest daughter Mia, 11, was growing imaginative and prescient issues when she was three years outdated.
“In the course of the night time she would stumble upon furnishings or a wall. At first we didn’t assume something of it. After some time we realized one thing was fallacious,” Lemay mentioned.
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Mia underwent a number of checks with an opthamologist and in addition had genetic testing executed. She was finally recognized with retinitis pigmentosa, a degenerative hereditary retinal illness.
“What occurs is the retina is slowly dying, and she or he loses cells from the skin to the within,” Lemay mentioned. “Her visual view will diminish slowly. They don’t understand how quick it should go, or if she is going to lose it utterly or she will preserve a few of it. Time will inform.”
Of the Pelletiers three different kids – Leo, 9, Colin, 7, and Laurent, 5 – Leo is the one one who doesn’t have the gene.
There isn’t a remedy for the situation.
“Properly in fact it’s a shock,” Lemay mentioned. “Every thing you deliberate in your future – in your children, for your self – you completely must rethink that.”
“I actually really feel for the mother and father, as a result of after they get that analysis their hopes and their goals modifications,” mentioned Doug Earle, the president and CEO of Preventing Blindness Canada. “For this household right now, there is no such thing as a remedy possibility. (The youngsters) will slowly lose photoreceptors and lose their sight.”
Earle says there’s a examine in France attempting to deal with the illness.
“Remedy analysis is providing hope and this medical trial going down in France presents an awesome potential for having the ability to exchange the gene that isn’t working with one that’s,” Earle mentioned.
Lemay says she isn’t ready for a remedy, selecting as a substitute to dwell within the second. The household has labored with organizations to assist the youngsters put together for what’s going to finally come.
“The toughest half to just accept just isn’t to have the ability to do something,” she mentioned.
It was one of many specialists she noticed who advised Lemay the perfect factor she may do for her kids was to create visible reminiscences. That sparked the concept to spend a 12 months travelling, so her children may see the world.
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The journey was postponed when COVID hit, however they finally set off in March of this 12 months. They’ve travelled to Namibia, Zanzibar, Turkey, Mongolia and Bali. They’ve travelled by practice, bus, slept in tents, ridden camels and horses, gone on safari, pushed dune buggies by way of the Gobi dessert, and eaten extra boiled mutton than they may ever think about.
Lemay says there have been difficult moments, as a result of the household are collectively on a regular basis and the youngsters are younger. However she says in visiting poverty-stricken cities all over the world, her children have discovered to understand their very own lives.
“I’m glad they’re beginning to understand they’re actually fortunate to go on that journey,” Lemay mentioned. “They’re seeing what it’s to dwell with out electrical energy, with out operating water. They know they’re actually lucky of their life normally. Sure they’ll have challenges. Hopefully they’ll be capable to respect what they’ve.”
The mother and father are homeschooling their children whereas they proceed travelling for the following six months. Their aim is to take in as a lot as they’ll, creating reminiscences to final a lifetime.
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