Edith Lemay and Sebastien Pelletier are unlucky when 3 out of 4 of their children have retinitis pigmentosa.
Canadian couple Edith Lemay and Sebastien Pelletier first noticed that their daughter Mia was having vision problems when she was 3 years old.
Mia is the eldest of their four children and she was diagnosed with retinitis pigmentosa, a rare genetic condition that causes vision loss or deterioration over time.
By this point, Lemay and Pelletier had been married for 12 years and were desperate to find that their sons Colin, now 7, and Laurent, now 5, were also experiencing similar symptoms.
In 2019, the boys were also diagnosed with the same genetic disorder. Fortunately, son Leo, now 9 years old, was declared free of the disease.
“There is really nothing you can do, there is currently no cure or effective treatment to slow the progression of retinitis pigmentosa. We don’t know how quickly the disease comes on, but we predict the three will be completely blind by middle age.”
After receiving a notification from the doctor, the couple focused their attention on helping their children build the skills they would need in the future.
When Mia’s specialist suggested that they could help her use “visual memories,” Lemay found a way to help her and the other two boys.
“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 will fill Mia’s visual memory with the best, best images I can,” Lemay shared.
She and her husband began planning to spend a year traveling around the world with their children. Before becoming parents, Lemay and Pelletier often traveled together. Their children have also traveled, but such a long and long trip is unprecedented for them.
Pelletier, who works in finance, said:
“After the diagnosis, we were in a hurry. We have many great things to do at home, but nothing is better than traveling. Not only the scenery, but also to see different cultures and people.”
The couple put all their savings on the trip. Fortunately, the company Pelletier worked for and had shares in was bought by another party, giving the couple more money.
The family of six had originally planned to depart in July 2020 and had planned an itinerary that would include crossing Russia by land or exploring China.
However, they were forced to delay their trip due to travel restrictions caused by the Covid-19 pandemic. They also had to modify the itinerary countless times. Finally, upon leaving Montreal in March 2022, very few family trips followed the original plan.
“We literally left without an itinerary,” says Lemay. We already have an idea of where we want to go, but we plan as we go, maybe a month in advance.”
The family has had trips in the wilds of Namibia, Zambia, Tanzania, in Turkey for a month, Mongolia, Indonesia. They promise to update photos of new places via Instagram and Facebook in the near future.
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