Edith Lemay and Sebastien Pelletier received devastating news after noticing that their daughter, Mia, had been having some eye and vision issues. At the time, she was just 3 years old and it was scary for them to watch her struggle. Neither parent, however, was unprepared for what would come next.
Mia was diagnosed with retinitis pigmentosa, a rare genetic eye disease that causes vision loss over time. From there, the family uncovered that Mia, their oldest, was not the only one of their four children who would be affected by the disease.
Not long after Mia's diagnosis, Lemay and Pelletier noticed that two of their three sons also had issues with their vision.
Two of their other children, Colin and Laurent, were diagnosed with the same condition as Mia, according to CNN. Three of their four children have now had to face the news that they would eventually completely lose their vision because there is no cure for the disease.
Retinitis pigmentosa is a disease that people are born with, and it's caused by more than 100 genes.
Because of the large number of genes that cause the condition, there is no cure to help stop it or fix it. In addition, each person with the disease is affected very differently.
"We don't know how fast it's going to go, but we expect them to be completely blind by mid-life," Lemay told CNN when speaking about the children's vision.
The parents had to grapple with the news and change the way they think about things.
Both parents decided that they had to help their children to learn the skills they will need to navigate life once their vision changes. Lemay shared that things really changed, however, when a specialist Mia was working with suggested the family create "visual memories" for her children to see and remember. Lemay thought that the best way to do this was through travel.
Lemay and Pelletier shared that they felt a sense of urgency for heir children to see the world.
The couple had always been interested in traveling, even before marriage and kids. But in order to create these visual memories, they knew there was nothing better than going to see things in person, in real time.
"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. And I'm going to fill her visual memory with the best, most beautiful images I can," Lemay told CNN.
The family originally planned their trip for 2020.
When the COVID-19 pandemic hit, it put a pause on their plans. But the time at home in Montreal allowed the children and their parents to create a list of things they wanted to do and wanted to see. When they finally departed in March 2022, Lemay said her kids had a bucket list of things they wanted to accomplish.
The family started their journey in Namibia, Zambia, and Tanzania. They then flew to Turkey, Mongolia, and Indonesia.
Although traveling for months has been rewarding for the family, it also has taught them a lot.
Lemay shared that they have focused on sights, colors, and animals for the children to see throughout their travels. They wanted to show them things that they would never have the opportunity to see at home in Canada. Aside from the joys and inspiration that comes from seeing new things, however, Lemay hopes traveling will teach her children skills they will need down the road, such as how to cope with adversity.
"Traveling is something you can learn from. It's nice and fun, but it also can be really hard," she said to CNN. "You can be uncomfortable. You can be tired. There's frustration. So there's a lot that you can learn from travel itself."
The parents say that they, too, have learned a lot during their time overseas.
Lemay and Pelletier are not sure what tomorrow will bring for their three children and their condition, but they have learned to appreciate and live in the moment rather than planning so far ahead. "This trip has opened our eyes to a lot of other things, and we really want to enjoy what we have and the people that are around us," Pelletier told CNN.
And it has been a touching experience for the parents to see how close their children have become throughout their journey. Although only three of their four children have the condition, all are homeschooled together on the road and have been by each other's sides throughout their trip, which will wrap up in March.
"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," Pelletier said.
You can follow the family's journey and story on Facebook and Instagram.
