Current Events > Canadian family taking children on world tour before kids lose vision

(+) Yeah! (+)

seems like each of their three kids inherited a genetic illness where they lose their vision/their vision is greatly impaired over time.

Their daughter Mia was just three years old when Canadian couple Edith Lemay and Sebastien Pelletier first noticed that she was having vision problems.
A few years after they first took her to see a specialist, Mia, the eldest of their four children, was diagnosed with retinitis pigmentosa, a rare genetic condition that causes a loss or decline in vision over time.

By this point, Lemay and Pelletier, who've been married for 12 years, had noticed that two of their sons, Colin, now seven, and Laurent, now five, were experiencing the same symptoms.
Their fears were confirmed when in 2019 the boys were diagnosed with the same genetic disorder; their other son Leo, now nine, was given the all clear.
"There's nothing you can really do," says Lemay, explaining that there is currently no cure or effective treatment to slow down the progression of retinitis pigmentosa.
"We don't know how fast it's going to go, but we expect them to be completely blind by mid-life."

Once they came to terms with the news, the couple focused their attentions on helping their children build the skills they'd need to navigate their way through life.
When Mia's specialist suggested that they engross her with "visual memories," Lemay realized that there was one truly incredible way that they could do just that for her and the rest of the children.
"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 explains. "And I'm going to fill her visual memory with the best, most beautiful images I can."
She and her husband soon began making plans to spend a year traveling around the globe with their kids.
While Lemay and Pelletier traveled together frequently before they became parents, and had taken their children on various trips, going on an extended trip as a family hadn't seemed feasible before.
"With the diagnosis, we have an urgency," adds Pelletier, who works in finance. "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."
They soon began trying to build up their savings, and their travel pot received a welcome boost when the company that Pelletier worked for and had shares in was bought.
"That was like a little gift from life," admits Lemay, who works in healthcare logistics. "Like, here's the money for your trip."
The family of six were originally due to set off in July 2020, and had planned an in-depth itinerary that involved traveling through Russia by land, and spending time in China.

However, they were forced to delay their trip by a number of years due to the travel restrictions brought about by the global pandemic, and revised their itinerary countless times. When they eventually left Montreal in March 2022, they had few plans in place.
"We actually left without an itinerary," says Lemay. "We had ideas of where we wanted to go, but we plan as we go. Maybe a month ahead."
Before they set off, the Lemay-Pelletier family created something of a bucket list of experiences for their travel. According to Lemay, Mia wanted to go horseback riding, while Laurent wanted to drink juice on a camel.

"It was really specific and very funny at the time," she adds.
They began their trip in Namibia, where they got up close to elephants, zebras and giraffes, before heading to Zambia and on to Tanzania, and then flying to Turkey, where they spent a month. The family then made their way to Mongolia, before moving on to Indonesia.
"We're focusing on sights," explains Pelletier. "We're also focusing a lot on fauna and flora. We've seen incredible animals in Africa, but also in Turkey and elsewhere.
"So we're really trying to make them see things that they wouldn't have seen at home and have the most incredible experiences."
Aside from witnessing beautiful sights while their vision is still relatively strong, the couple hope that the trip will help the children develop strong coping skills.
According to the National Eye Institute, part of the US National Institutes of Health, an agency of the US Department of Health and Human Services, retinitis pigmentosa symptoms usually begin in childhood, and most people eventually lose most of their sight.
"They're going to need to be really resilient throughout their life," adds Lemay, pointing out that Mia, Colin and Laurent will have to constantly readjust as their eyesight worsens.

more at link: https://www.cnn.com/travel/amp/canadian-family-retinitis-pigmentosa/index.html

Its cool they are wealthy enough to be able to do that. Being disabled in Canada is basically a lifetime sentence to poverty

Future Habs fan.
Better to not see them be awful.

Haven't there been increasing technology to help that? I remember seeing some "getting people who were born blind to see for the first time" articles.

bump

Snip-N-Snails posted...

Haven't there been increasing technology to help that? I remember seeing some "getting people who were born blind to see for the first time" articles.

Yes, but it's highly experimental, somewhat invasive, and only really let's you see vague shapes.

One of the companies making the devices is also going under, completely screwing everyone who already went through the procedure to use their product.

I could see doing this

Snip-N-Snails posted...

Haven't there been increasing technology to help that? I remember seeing some "getting people who were born blind to see for the first time" articles.

Depends on why you're blind. There's no helping people who are blind because of brain damage.

[LFAQs-redacted-quote]

Being disabled often means employers won't take you on. You're forced to take low pay, low skill jobs. If you can get a job at all.

EyeWontBeFooled posted...

Being disabled often means employers won't take you on. You're forced to take low pay, low skill jobs. If you can get a job at all.

In Denmark IIRC if you've got a mental disability you're forced into early retirement.

Yeah. Disability really is a poverty mechanism for the country. It's hard enough making ends meet when you're at full function, but being unable to work? Enjoy your monthly stipend and eating top ramen everyday.

Naysaspace posted...

Its cool they are wealthy enough to be able to do that. Being disabled in NORTH AMERICA is basically a lifetime sentence to poverty

ftfy dude

Actually we could even go as far as the world due to the capitalistic state of our global economy.

s0nicfan posted...

Yes, but it's highly experimental, somewhat invasive, and only really let's you see vague shapes.

One of the companies making the devices is also going under, completely screwing everyone who already went through the procedure to use their product.

Adduming it's just because of financial issues I wish programs like that was funded more, over some of the more currently funded ones.

"Without it I'd be even blinder"

This is tragic though. Not being able to see anything sucks.

s0nicfan posted...

Yes, but it's highly experimental, somewhat invasive, and only really let's you see vague shapes.

One of the companies making the devices is also going under, completely screwing everyone who already went through the procedure to use their product.

That's unfortunate.

Tyranthraxus posted...

Depends on why you're blind. There's no helping people who are blind because of brain damage.

I see. It appears retinitis pigmentosa is a retina affecting disorder which sound like something that would apply to these new technology.