Quebec household touring the world earlier than youngsters go blind – Montreal

Quebec household touring the world earlier than youngsters go blind – Montreal

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 abnormal journey for the household of six. The mother and father need their youngsters 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 lovely 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began noticing their eldest daughter Mia, 11, was growing imaginative and prescient issues when she was three years outdated.

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“Throughout 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 incorrect,” Lemay mentioned.

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Mia underwent a number of checks with an opthamologist and likewise had genetic testing performed. She was finally identified with retinitis pigmentosa, a degenerative hereditary retinal illness.

“What occurs is the retina is slowly dying, and she or he loses cells from the surface to the within,” Lemay mentioned. “Her sight view will diminish slowly. They don’t know the way quick it would go, or if she is going to lose it fully 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 any remedy for the situation.

“Nicely in fact it’s a shock,” Lemay mentioned. “The whole lot you deliberate to your future – to your youngsters, for your self – you completely have to rethink that.”

Click to play video: 'Quebec family wants treatment covered for 11 year-old with vision loss'

Quebec household needs therapy coated for 11 year-old with imaginative and prescient loss

Quebec household needs therapy coated for 11 year-old with imaginative and prescient loss – Aug 29, 2022

“I actually really feel for the mother and father, as a result of after they get that analysis their hopes and their desires modifications,” mentioned Doug Earle, the president and CEO of Preventing Blindness Canada. “For this household at this time, there isn’t any therapy choice. (The children) will slowly lose photoreceptors and lose their sight.”

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Earle says there’s a examine in France taking a look at making an attempt to deal with the illness.

“Therapy analysis is providing hope and this scientific trial going down in France affords an excellent potential for with the ability to change 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 reside within the second. The household has labored with organizations to assist the kids put together for what’s going to finally come.

“The toughest half to simply 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 most effective factor she may do for her kids was to create visible reminiscences. That sparked the concept to spend a yr travelling, so her youngsters may see the world.

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The journey was postponed when COVID hit, however they finally set off in March of this yr. 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 might ever think about.

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Lemay says there have been difficult moments, as a result of the household are collectively on a regular basis and the kids are younger. However she says in visiting poverty-stricken cities all over the world, her youngsters have realized to understand their very own lives.

“I’m glad they’re beginning to notice they’re actually fortunate to go on that journey,” Lemay mentioned. “They’re seeing what it’s to reside with out electrical energy, with out working water. They know they’re actually lucky of their life on the whole. Sure they may have challenges. Hopefully they may be capable to respect what they’ve.”

The mother and father are homeschooling their youngsters whereas they proceed travelling for the following six months. Their aim is to absorb as a lot as they’ll, creating reminiscences to final a lifetime.

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