(CNN) – Their daughter Mia was just three years old when Canadian couple Edith LeMay and Sebastien Pelletier noticed she had vision problems.
A few years after taking Mia, the eldest of her four children, to see a specialist, she was diagnosed with retinitis pigmentosa, a rare genetic disease that causes loss or double vision over time.
By then, Lemay and Pelletier, who had been married for 12 years, noticed that their two other children, Colin, now seven, and Laurent, five, were experiencing the same symptoms.
Their fears were confirmed when the children were diagnosed with the same genetic disorder in 2019; His other son Liu, now nine, got the go-ahead.
“There’s really nothing you can do,” LeMay says, explaining that there is currently no effective treatment or treatment to slow the progression of retinitis pigmentosa.
“We don’t know how quickly you will progress, but we expect that they will be completely blind by middle age.”
Once they accepted the news, the couple turned their attention to helping their children gain the skills they need in life.
When Mia’s specialist suggested they wrap her in “visual souvenirs,” LeMay knew there was a really cool way to do this for her and the rest of the kids.
“I thought, I wouldn’t show her an elephant in a book, I’d take her to see a real elephant,” he explains. “And I will fill your visual memory with the best and most beautiful pictures I can.”
Soon, she and her husband began planning to spend an entire year traveling the world with their children.
Although Lemay and Pelletier frequently traveled together before they became parents, and took their children on several trips, a long family trip was not possible until now.
“With the diagnosis, we have urgency,” adds Pelletier, who works in finance. “There are wonderful things to do at home, but there is nothing better than traveling.”
“Not only the landscape, but also the different cultures and people.”
Soon they began trying to accumulate savings, and their travel boat received a welcome boost when the company Pelletier worked for was acquired and he owned shares for which he was compensated.
“It was such a small gift from life,” admits LeMay, who works in healthcare logistics. “It was like, ‘This is the money for your trip.'”
The family of six was originally scheduled to leave in July 2020, and has planned an all-inclusive itinerary that includes traveling through Russia by land, and spending time in China.
However, they were forced to delay their flight for several years due to travel restrictions imposed by the global pandemic, and they revised their itinerary countless times. When they finally left Montreal in March 2022, they had few plans.
“We actually left without an itinerary,” LeMay says. “We had ideas about where we wanted to go, but we planned as we went. Maybe a month ago.”
Before leaving, the Lemay-Pelletier family created a kind of experience list for their trip. According to Lemay, Mia wanted to ride a horse, while Laurent wanted to drink juice on a camel.
“It was very specific and very interesting at the time,” he adds.
The family began their journey in Namibia, where they saw elephants, zebras and giraffes up close, before heading to Zambia and Tanzania, before traveling to Turkey, where they spent a month. The family then headed to Mongolia, before moving to Indonesia.
“We focused on the perspectives,” Pelletier explains. “We also focused a lot on animals and plants. We saw amazing animals in Africa, but also in Turkey and elsewhere.
“So we try to get them to see things they haven’t seen at home and have some amazing experiences.”
In addition to seeing beautiful scenery while their vision is still relatively strong, the couple hope the trip will help the children develop strong coping skills.
according to him National Eye Institutepart 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 end up losing most of their sight.
“They will have to be very resilient throughout their lives,” adds LeMay, noting that Mia, Colleen, and Laurent will have to constantly re-adapt as their eyesight deteriorates.
“Travel is something you can learn from. It’s beautiful and fun, but it can also be very challenging. You can be uncomfortable. You can be tired. There is frustration. So there is a lot you can learn from the trip itself.”
While 12-year-old Mia has known about her illness since she was seven, Colin and Laurent recently found out and started asking tough questions.
“My young son asked me, ‘Mom, what does it mean to be blind?'” LeMay says. Will I drive a car? “He is five years old. But little by little he understands what is happening. It was a normal conversation for him. But for me it was heartbreaking.”
For Leo, his second eldest son, knowing his siblings’ genetic status was “always a fact”.
Lemay and Pelletier hope that being able to spend time in different countries and experience different cultures will show all children how lucky they are, despite challenges that may arise later in life as their vision deteriorates.
Adds LeMay, who says four kids adapted to life on the road with relative ease.
“They are very curious,” he says. “They adapt easily to new countries and new food. I really like them.”
Although visual experiences remain a priority, Lemay says the journey has become more about showing “something different” to children and providing them with unforgettable experiences.
“There are beautiful places all over the world, so it doesn’t really matter where we go,” he explains.
“And we never know what will impress them. We tell ourselves that [pensarán] That’s cool and then they see dogs on the street and that’s the best thing in their lives.
Lemay says that others who have been diagnosed or have a family member diagnosed with retinitis pigmentosa have reached out to her with words of encouragement.
In fact, a teacher at a school specializing in Quebec for blind or visually impaired students is among his 11,000 followers on Facebook and regularly recounts 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 are part of the journey with us. Being able to share this with others is a very nice gift and I’m so grateful for it. It makes me so happy.”
Lemay and Pelletier admit that the diagnosis is always on their mind, but they focus on living in the moment and “focusing their energy on positive things.”
“We never know when it can start or how fast it can start,” Pelletier adds. “So we really want to take this time as a family and take care of each of our children so we can live this experience to the fullest.”
Although the family plans to return home to Quebec next March, they say they are trying not to think too much about the future. In fact, being able to live in the moment is one of the main things the family has learned in recent months.
“This trip has opened our eyes to many other things, and we really want to enjoy what we have and the people around us,” says Pelletier.
“If it can continue when we come back, even in our daily routine, that would be a really great feat.”
Although traveling as a family wasn’t easy, the couple also homeschooled their children during the trip, and Lemay and Pelletier say one of the highlights is that the bond between the children is strengthening.
“They are very good together,” he adds. “Above all, I think it helps solidify that bond between them. I hope this continues in the future, so they can support each other.”
Pelletier stresses that they still hope that Mia, Colin, and Laurent will never go 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 keep our fingers crossed for this. But we know it can happen, so we want to make sure our kids are equipped to take on these challenges.”
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