(CNN) — Canadian couple Edith Lemay and Sebastien Pelletier first noticed their daughter Mia was three years old when she was visually impaired.
A few years after Mia, the oldest of her four children, was first taken to see a specialist, she was diagnosed with retinitis pigmentosa, a rare genetic disease that causes vision loss or diminution over time.
By then, Lemay and Pelletier, who had been married for 12 years, noticed their other two children, Colin, now seven, and Laurent, five, were experiencing the same symptoms.
Their fears were confirmed in 2019 when the children were diagnosed with the same genetic disorder; His other son Leo, now nine, was given the lead.
“There’s really nothing you can do,” LeMay says, explaining that there is currently no effective treatment or cure to slow the progression of retinitis pigmentosa.
“We don’t know how fast it will progress, but we expect them to be completely blind by middle age.”
Once they accepted the news, the couple focused on helping their children acquire the skills they would need in life.
When Mia’s specialist suggested they wrap her around in “visual keepsakes,” LeMay realized there was a truly wonderful way to do that for her and the other 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,'” he explains. “I’m going to fill your visual memory with the best and most beautiful images I can.”
She and her husband soon planned to spend a year traveling the world with their children.
Although Lemay and Pelletier traveled together often before becoming parents and took their children on several trips, taking an extended family trip didn’t seem possible until now.
“With the diagnosis, we have a rush,” says Pelletier, who works in finance. “There are great things to do at home, but nothing beats traveling.”
“Not just the terrain, but also the different cultures and people.”
They soon began trying to accumulate savings, and their cruise ship received a welcome boost when the company Pelletier worked for and owned a stake in.
“It was like a little gift of life,” admits LeMay, who works in healthcare logistics. “It was like, ‘Here’s your travel money.'”
The family of six was originally scheduled to leave in July 2020 and had planned an extensive itinerary that included traveling around Russia and spending time in China.
A great achievement
However, travel restrictions brought on by the global pandemic forced them to delay their trip for years, and revised their itinerary countless times. When they finally left Montreal in March 2022, they had some plans.
“We really got away without a trip,” LeMay says. “We had ideas of where we wanted to go, but we planned on the way. Maybe a month in advance.”
Before leaving, the Lemay-Pelletier family made a list of experiences for their trip. According to Lemay, Mia liked to ride a horse, while Laurent liked to drink juice on a camel.
“It was very specific and very fun at the time,” he adds.
The family began their journey in Namibia, where they saw elephants, zebras and giraffes up close, before moving on to Zambia and Tanzania, before flying to Turkey, where they spent a month. The family moved to Mongolia before moving to Indonesia.
“We focused on vision,” explains Pellitier. “We also focused a lot on fauna and flora. We saw amazing animals in Africa, but also in Turkey and elsewhere.
“So we’re trying to get them to see things they might not have seen at home and have some amazing experiences.”
In addition to seeing beautiful sights while their eyesight is still strong, the couple hopes the trip will help the children develop strong coping skills.
According to him National Eye InstituteIt is part of the US National Institutes of Health, an agency of the US Department of Health and Human Services, symptoms of retinitis pigmentosa usually begin in childhood, and most people lose most of their vision.
“They have to be very resilient throughout their lives,” says Lemay, noting that Mia, Colin and Laurent must constantly adjust to their deteriorating eyesight.
“Travel is something you can learn from. It’s beautiful and fun, but it can also be very difficult. You can be uncomfortable. You can be tired. There’s frustration. So there’s a lot you can learn from travel.”
While Mia, now 12, has known about her illness since she was seven, Colin and Laurent only recently found out and started asking the hard questions.
“My little boy asked me, ‘Mom, what does it mean to be blind? Am I going to drive a car?'” says Lemay. “He’s five years old. But little by little he realizes what is happening. It was a normal conversation for him. But for me it was heartbreaking.”
For his second-oldest son, Leo, the knowledge of his brothers’ genetic status was “always true.”
Lemay and Pelletier believe that spending time in different countries and experiencing different cultures shows all children how lucky they are, despite the challenges that may arise later in life as their vision deteriorates.
“I wanted to show them how lucky they are to have water at home, no matter how hard their lives are, and to be able to go to school every day with beautiful coloring books,” says Lemay. The four children adjusted to life on the road relatively easily.
“They’re very interested,” he says. “They adapt easily to new countries and new foods. I’m very impressed with them.”
Although the visual experiences are primary, LeMay says the trip has become about showing kids “something different” and giving them unforgettable experiences.
“There are beautiful places all over the world, so it doesn’t matter where we go,” he explains.
“We don’t know what’s going to attract them. We tell ourselves that [pensarán] Something is wonderful and then they see puppies on the street and it’s the best thing in their lives.
LeMay says that people who have or have a loved one with retinitis pigmentosa have reached out to her with words of encouragement.
In fact, a teacher at a special school for blind or visually impaired students in Quebec has one of her 11,000 Facebook followers and regularly chronicles her adventures in her class.
“Every week, open the Facebook page and describe all the photos or read what I write,” says Lemay.
“And in a way they’re part of the journey with us. It’s a nice gift to be able to share this with others, and I’m very grateful. It makes me very happy.”
Lemay and Pelletier admit the diagnosis is always on their minds, but they’re focused on living in the moment and “focusing their energy on positive things.”
“We don’t know when it will start or how fast it might go,” Pelletier says. “So we want to take this time as a family and take care of each of our children so that we can live this experience to the fullest.”
Although the family plans to return to Quebec next March, they say they are not thinking too far ahead. In fact, the ability to live in the moment is one of the most important things the family has learned in recent months.
“This trip has opened our eyes to so many things and we really want to enjoy what we have and the people around us,” says Pelletier.
“When we come back, even in our daily routines, if we can continue that, it will be a good achievement.”
While traveling as a family isn’t easy, the couple has homeschooled their children while traveling, and Lemay and Pelletier say one of the highlights is seeing the bond between the children grow stronger.
“They look good together,” she adds. “More than anything, I think it helps solidify that bond between them. It will continue into the future so they can support each other.”
Pelletier insists that they are hopeful that Mia, Colin and Laurent will never be blind. But for now, they’re doing their best to make sure they can handle whatever the future throws at them.
“Hopefully science will find a solution,” says Pelletier. “We’re keeping our fingers crossed for that. But we know it’s going to happen, so we want to make sure our kids are ready to face these challenges.”