Edith Lemay and Sebastien Pelletier’s daughter, Mia, was three years old when the couple found out the eldest of their four children had a rare genetic condition called “retinitis pigmentosa,” which causes a gradual loss or decline in vision. The family later found out that two sons also have the same visual impairment.
Lemay and Pelletier then noticed that their two sons, 5-year-old Laurent and 7-year-old Colin, were also showing similar symptoms. In 2019, the couple, who had been married for over 12 years, had the same genetic disorder. The couple also have another son, nine-year-old Leo – the only child in the family to test negative for the disorder.
In conversation with
CNN tripthe couple revealed that there is currently no cure for retinitis pigmentosa or an effective treatment to slow down the symptoms.
“We don’t know how soon it will be, but we expect they will be completely blind by midlife,” the couple said.
It took them some time to come to terms with the fact that three of their four children would soon go blind. So the pair began preparing their children for their life ahead with useful skills and knowledge that can help them navigate when they lose their sight.
The couple went on to reveal that the plan to see the globe together as a family began brewing after their daughter, Mia’s specialist, introduced them to the concept of “visual memories”. It was then that the couple began making a plan to travel around the world with the children for a year.
And so began the adventures of the Lemay-Pelletier family as they set out to tick places off their bucket list.
“With the diagnosis, we have an urgency,” said Pelletier, who works in finance, adding, “There are great things to do at home, but there’s nothing quite like travelling. Not only the landscape, but also the different cultures and people. ”
The family of six soon began saving money for their trip and planned to take off in 2020, which included a stay in China and a land tour of Russia.
“We focus on landmarks,” explains Pelletier. “We also focus a lot on fauna and flora. We have seen incredible animals in Africa but also in Turkey and elsewhere. “So we’re really trying to let them see things that they wouldn’t have seen at home and have the most incredible experiences.”
said Lemay
CNN that her children – Mia, Colin and Laurent – must be really resilient throughout their lives as they constantly have to readjust as their eyesight deteriorates.
From getting up close to elephants, zebras and giraffes to enjoying fauna and flora, the couple make sure their children get the full visual experience. “We focus on sights,” Pelletier added.
“We also focus a lot on fauna and flora. We have seen incredible animals in Africa but also in Turkey and elsewhere. “So we’re really trying to let them see things that they wouldn’t have seen at home and have the most incredible experiences.”
The couple shares all the pictures and videos of the family and their children when they are out on their official Instagram profile, where they have over 83.9k followers.
