Canadian Family Travels Before Children Succumb to Rare Genetic Condition Retinitis Pigmentosa, Eventually Blindness

A Canadian family is taking a trip to see the world before three of their children develop retinitis pigmentosa, a rare genetic condition that can lead to blindness.

When Canadian parents Sebastien Pelletier and Edith Lemay first started to notice that their daughter Mia had vision issues, their daughter was only three years old.

Mia, the oldest of the four children, was diagnosed with a rare genetic condition called retinitis pigmentosa, a few years after they first took her to a specialist. The condition results in a loss or deterioration in vision over time.

By this time, Pelletier and Lemay, who have then been married for 12 years, had observed that their two sons, Laurent, now 5, and Colin, now 7, were exhibiting the same symptoms.

When the boys received the same genetic disorder diagnosis in 2019, their fears were confirmed. Leo, their other son, who is now nine, received the all-clear at the same time.

Lemay says that Since there is currently no cure for retinitis pigmentosa or reliable treatment to halt its progression, there is nothing that can be done.

Although the parents are unsure of how quickly it will progress, they anticipate that by midlife, the children will be fully blind.

Visual memories

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.

Mia's specialist recommended that they engage her with "visual memories." Lemay recognized that there was one truly amazing way that they could do exactly that for Mia and the other kids.

Lemay believes it is way better that she will take her daughter to see an actual elephant rather than show her an elephant from a book. Lemay declares that she will give her daughter the best, most beautiful images possible to store in her visual memory.

She and her husband quickly started planning to spend a whole year traveling the world with their children.

Even though Lemay and Pelletier had taken their children on several trips and had traveled together regularly before becoming parents, an extended family vacation hadn't previously seemed doable.

Pelletier, who works in finance, adds that the retinitis pigmentosa diagnosis comes with a sense of urgency. There are wonderful activities to do at home, but nothing beats traveling. not only to view the scenery, but also the various people and cultures.

They quickly started working on saving money, and when the company Pelletier worked for and owned shares in was acquired, it gave them a much-needed boost.

Lemay, who works in healthcare logistics, admits that it was like a little gift from life, as the money for their trip was suddenly provided to them.

The six-person family had a detailed itinerary that included visiting China and traveling across Russia by land. They were originally scheduled to leave in July 2020, CNN Travel reports.