After learning that their children have retinitis pigmentosa, a rare genetic illness that results in visual loss or deterioration over time, a Canadian family decided to go on a tour.
When Canadian parents Edith Lemay and Sebastien Pelletier first recognized that their daughter Mia had vision issues, she was only three years old.
Mia, the oldest of their four children, received a diagnosis of retinitis pigmentosa a few years after they first took her to a specialist.
By this time, Lemay and Pelletier, who have been married for 12 years, had observed that their two boys, Laurent, now 5, and Colin, now 7, were exhibiting the same symptoms.
When the boys were diagnosed with the same genetic condition in 2019, their concerns were verified whereas their other son Leo, now nine, was given the all-clear.
Lemay believes that because there is presently no cure or reliable method to halt the growth of retinitis pigmentosa, “there’s basically nothing you can do.”
We don’t know how quickly it will progress, but by midlife, we anticipate they will be totally blind.
Once the couple had come to terms with the news, they concentrated on giving their kids the tools they would need to succeed in life.
Lemay saw that there was one particularly amazing way that they could do just that for Mia and the other kids when Mia’s specialist suggested that they engage her with “visual memories.”
Thus, she and her husband soon began preparing for their year-long global family vacation.
They quickly started working on conserving money, and when the firm Pelletier worked for and owned shares in was acquired, it gave them a much-needed boost.
The six-person family had a detailed itinerary that included visiting China and traveling across Russia by land that was initially scheduled to leave in July 2020.
However, because of the travel limitations brought on by the global epidemic, they were forced to postpone their journey for a number of years and repeatedly changed their plan. They finally departed Montreal in March 2022, but they didn’t have many plans in place.
The journey began in Namibia, then continued through Zambia, Tanzania, and a flight to Turkey, where they spent a month. After that, the family traveled to Mongolia before continuing on to Indonesia.
The couple hopes that the trip will aid in the children’s development of strong coping abilities, in addition to allowing them to take in gorgeous sights while their vision is still quite sharp.
Although Lemay and Pelletier acknowledge that they are constantly thinking about their diagnosis, they are instead concentrating on the present and “placing their energy into the positive things.”
The family says they’re trying not to think too far ahead even though they intend to go back to Quebec in March. In fact, one of the most important lessons the family has learned over the past several months is how to live in the present.