Canadian family touring the world before kids lose vision

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Canadian family touring the world before kids lose vision, Canadian parents Edith Lemay and Sebastien Pelletier were alarmed to discover their three-year-old daughter Mia was experiencing eyesight difficulties.

Mia, the eldest of their four children, was diagnosed with retinitis pigmentosa, a rare genetic illness that causes progressive visual loss, a few years after they initially took her to a specialist.

Lemay and Pelletier, who have been married for 12 years, have two sons, Colin, 7, and Laurent, 5. Both boys have begun exhibiting similar symptoms.

The boys’ 2019 diagnosis with the same genetic condition confirmed their worst fears; their second son, nine-year-old Leo, was given the all-clear.

Lemay remarks, “There’s nothing you can truly do,” referring to the fact that retinitis pigmentosa has no known cure and no effective treatments to slow its growth.

We can’t predict how quickly it will progress, but they should be totally blind by middle age at the latest.

Recollections of the sights and sounds

The couple, having accepted the news, turned their attention to providing their kids with the tools they’d need to succeed.

Lemay thought of an outstanding technique to capture Mia and the other kids’ attention with “visual memories” after hearing this recommendation from Mia’s specialist.

She elaborates, “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. I’m going to show her the most stunning pictures I can find and imprint them on her mind forever.

Soon after, she and her husband started plotting out a yearlong trip across the world with their children.

Although Lemay and Pelletier had taken their children on several trips before they became parents, the idea of taking an extended trip together as a family had never occurred to them.

“With the diagnosis, we have an urgency,” Pelletier, a financial expert, chimes in. “There’s much fun to be had at home, but there’s just no substitute for seeing the world.

“It’s not only the landscape; it’s the variety of people and cultures, too.”

They started trying to save up for a trip right away, and when Pelletier’s employer and the shares he owned were acquired, they had a nice financial boost.

According to Lemay, who is employed in healthcare logistics, “it was like a little gift from life. Like, here’s the money for your trip.”

The six-person family had planned an extensive schedule that included land travel through Russia and time in China, and they were ready to depart in July 2020.

Exciting journey

After postponing their departure from Montreal until March of 2022 due to travel restrictions caused by the global epidemic, they set out with very little in the way of a plan.

According to Lemay, “we actually departed without an itinerary.” “We had some general destinations in mind, but we’re making our plans on the fly. Perhaps a month in advance.”

According to Lemay, the Lemay-Pelletier family made a sort of vacation bucket list before setting off, with items like “go horseback riding” and “drink juice while riding a camel” at the top.

Moreover, “it was incredibly specific and really humorous at the moment,” she explains.

After starting out in Namibia, where they got to see elephants, zebras, and giraffes up close, the family traveled to Zambia and Tanzania via plane, then spent a month in Turkey, before continuing on to Mongolia and Indonesia.

Pelletier explains that the team’s attention is being directed at sights “Animals and plants are also major areas of interest for us. We have witnessed wonderful creatures not only in Africa but also in Turkey and elsewhere.

As a result, “we’re really trying to make them see things they wouldn’t have seen at home and have the most wonderful experiences,”

They want their kids to see the world while their eyes are still relatively young and healthy, and they also want them to come away from the journey with strong coping mechanisms.

Retinitis pigmentosa is an inherited retinal disease that causes progressive vision loss, typically beginning in early childhood, as reported by the National Eye Institute of the National Institutes of Health, a division of the United States Department of Health and Human Services.

Lemay emphasizes that Mia, Colin, and Laurent will need to be “very resilient throughout their life” because their eyesight will deteriorate with time, requiring them to make new adjustments all the time.

The Backing System

“There’s a lot that can be learned through travel itself. It’s lovely and fun, but it can also be incredibly hard. There can be discomfort, fatigue, and frustration.

Mia, now 12, has been aware of her disease since she was seven, but Colin and Laurent just learned about it and are starting to ask tough questions.

“What does it mean to be blind? Am I going to drive a car?” Lemay’s son inquired. For him, it was just another talk, but for me, it was really heartbreaking. “He’s just five, but he’s slowly grasping what’s happening.”

Leo, their second oldest, says that knowing about his siblings’ genetic disease has “always been a fact of life.”

Lemay and Pelletier want the kids to appreciate their good fortune despite the difficulties they may face in the future due to their vision loss by exposing them to new cultures and locations.

Lemay says that all four of his children have acclimated well to life on the road, and that he wanted to teach them that no matter how hard their life is going to be, they are happy merely to have running water in their home and to be able to go to school every day with wonderful colored books.

They are really inquisitive, she explains. I am quite pleased by how well they adjust to different environments and cuisines.

Lemay notes that while the sights and sounds of the journey are still important, the emphasis has shifted to giving the kids “something distinctive” to remember.

“There are lovely spots everywhere in the world, so it doesn’t really matter where we travel,” she says.

And just when we think we know what will blow their minds, they go and see puppies in the street and it’s the greatest thing in their life.

The vacation is being documented on social media by the family, who have been posting frequent updates on Facebook and Instagram.

Lemay reports that people with retinitis pigmentosa or others who have lost a loved one to the disease have reached out to provide support.

In fact, one of their 11,000 Facebook fans is a teacher at a Quebec school for the blind and visually impaired, and she frequently shares stories from their travels with her students.

On a weekly basis, “she checks the Facebook page and describes all the pictures or reads anything I’m posting,” Lemay adds.

“And in a way, they’re a part of the trip with us. To be able to share this with other people is a really great gift, and I’m really grateful for that. That makes me really happy.”