If your child received a life-altering diagnosis, you would probably stop at nothing to be sure they received the treatment needed to fight the disease—but what if it were incurable? What if three of your kids were diagnosed with the disease?
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That’s exactly the situation Canadian couple Edith Lemay and Sebastien Pelletier found themselves in a few years ago. Three of their four children have a rare genetic condition: retinitis pigmentosa. The disease causes vision loss over time and eventually leads to blindness.
Their oldest child Mia, now 12, was diagnosed when she was only 7. A few years later, Colin, 7, and Laurent, 5, were also found to have the condition, which slowly causes vision loss.
Just how rare is retinitis pigmentosa? Turns out, both parents have to carry the gene in order to pass it on to their children. As Lemay shared in an interview with Pipeaway, she and Pelletier had never heard of the disease. In fact, “Nobody had it in our families.”
The mom of four continued, “Both mum and dad need to have defective genes, so it is pretty rare. You really need to be unlucky to get it. Even if both of us have a gene, we statistically only have a 1-in-4 chance to transmit it. Well, it ended up being 3 out of 4,” alluding to the fact that their son Leo, 9, does not have the condition.
A Lifetime Full Of Visual Memories
Even though there is no cure for retinitis pigmentosa, Lemay and Pelletier knew they had to do something for their children. After talking with a specialist who recommended creating “visual memories” for their daughter, the couple decided that it was time to act.
“I thought, ‘I’m not going to show her an elephant in a book,” Lemay shared in an interview with CNN, “I’m going to take her to see a real elephant. And I’m going to fill her visual memory with the best, most beautiful images I can.”
So that’s exactly what the couple decided to do! They immediately made plans to travel the world as a family for an entire year. As Pelletier said in the same interview, “With the diagnosis, we have an urgency. There’s great things to do at home, but there’s nothing better than traveling.”
As the couple began to save for the trip of a lifetime, they received a boost thanks to Pelletier’s job. Since he had shares in the company he worked for, he received a nice sum when the company was bought. “That was like a little gift from life,” reflected Lemay. “Like, here’s the money for your trip.”
However, their excitement was short-lived once the pandemic began. The family planned to begin their adventure in the summer of 2020. Obviously, COVID-19 restrictions threw off their plans.
Instead of being dissuaded, the Quebec natives decided to seize the day and explore their homeland of Canada. They jumped in their car, socially distanced from others, and visited places closer to home.
As the family shared on Instagram, “It won’t be as exotic as Mongolia and probably a bit cooler than Tanzania, but we’re lucky enough to be confined in a beautiful country as well to enjoy!”
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As the pandemic continued, the family decided to keep their plans flexible. Finally, in March 2022, they were able to leave their home base of Montreal and begin their year-long globetrotting adventure!
Seeing The World Through A Child’s Eyes
The first stop on the trip was Namibia. The family set up a campsite, explored the coast, learned about the local culture from native people, and saw giraffes, elephants, and zebras. As for one of their favorite memories in Namibia, Lemay shared a surprising story with Pipeaway.
“When we were in Namibia, we visited these amazing sand dunes in Sossusvlei,” the mom of four remarked. “Laurent was so fascinated with their little black beetles they call toktokkie.” In fact, when the 5-year-old was asked what he liked most at the end of the day, toktokkie was his answer.
Laurent’s answer made his mother stop and think. She reflected, “[Our children] show us the beauty of the world. Beauty can be anywhere. So we need to be open to how they see the world and learn from it.”
Horseback Riding, A Train Ride, Kilimanjaro, And…Drinking Juice On A Camel?
After an amazing start to their adventure, the family continued on to Zambia and Tanzania. Then, they spent a month in Turkey followed by time in Mongolia. Turns out, their stint in Mongolia has been Mia’s favorite part of the trip so far.
The 12-year-old was set on going horseback riding on the Mongolian-Manchurian steppe, a grassland that covers over 340,000 square miles. Luckily, she was able to cross it off her bucket list!
In an Instagram post showcasing Mia’s adventure, the family shared, “What a moment she had being able to gallop in the steppe! The feeling of freedom! Walking in these vast landscapes, crossing herds of sheep or yaks, crossing rivers… Magic!”
Mia isn’t the only child who is crossing items off their bucket list. Although Lemay shared with Pipeaway that 9-year-old Leo was disappointed not to find any Pokémon in the wilderness of Japan, “His favorite moment so far was on a little hike we did on the foot of Kilimanjaro. The vegetation was so amazing, it was a really nice hike in the misty jungle.”
For 7-year-old Colin, going on a train ride has been the best adventure so far. “Colin’s best moment was in Tazara, the Tanzania-Zambia Railway, as he really wanted to sleep on the train,” remarked Lemay.
“It’s a 24-hour ride that we took through Tanzania, and it’s a really old slow train so it was amazing…And just sleeping on the train while it was rocking us, was really a cool moment of the trip.”
If you’re curious about what a 5-year-old has on their bucket list, just ask Laurent. Before even leaving their home, he knew exactly what he wanted to do: drink juice on a camel!
As the mom of three said, “He was 4 at the time when he made the request, but he was really specific. It was not about seeing a camel, he wanted to drink juice on a camel.”
Living Life To The Fullest
Although the family continues to have a great trip full of “visual memories” that will last a lifetime, Lemay and Pelletier also hope that the trip will help their kids develop coping skills. Since retinitis pigmentosa worsens with time, “[Our children are] going to need to be really resilient throughout their life,” Lemay told CNN.
As their kids learn how to cope, the parents hope that traveling will also be a teaching tool. “Traveling is something you can learn from. It’s nice and fun, but it also can be really hard,” remarked Lemay. “You can be uncomfortable. You can be tired. There’s frustration. So there’s a lot that you can learn from travel itself.”
While they want their children to learn how to cope with their condition, Lemay and Pelletier are also focused on living in the moment and “putting their energy into the positive things.”
As Pelletier said, “We never know when it can start or how fast it can go. So we really want to take this time as a family and to cater to each of our kids to be able to live this experience to the fullest.”
The family appears to be doing just that. After Mia fulfilled her dream in Mongolia, the family visited Indonesia, Malaysia, and then Thailand. Now the family is traveling around Cambodia. They’re taking in the breathtaking waterfalls and deserts while learning about the country’s history.
As the family continues their globetrotting adventure, the parents hope that their children will continue to live in the present and strengthen their sibling bond.
As Pelletier said about their kids, “They’re great together. Over and above, I think it helps solidify that link between them. And hopefully that will continue in the future, so that they can support each other.”
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