Retinitis Pigmentosa: Quebec couple introduces their baby to the world

Edith Lemay and Sébastien Pelletier decided to introduce their four children to the world, three of whom suffer from retinitis pigmentosa, a rare genetic disease that causes vision loss over time.

In an interview from Bali at the microphone of Benoît Dutrizac on QUB Radio, M^me Lemay claims that all three of his children will be completely blind by midlife.

“We decided to show them the beauty of the world before they can’t see it anymore. The goal is to fill their visual memory,” she says confidently, adding that there is no cure to slow down the disease.

“It’s a big shock, but I really want to look at it in a positive way. Yes, they have tests, but everyone has them. We have an opportunity to prepare ourselves and teach our children to be resilient,” she explained.

Mia, the eldest in the family, was bumping into walls and furniture at night at the age of three. At first, the couple thought it was because her eyes were not yet developed. However, after a battery of tests, the verdict is in.

“You can’t see what’s going on behind the eye. These cells in the retina die. We have to look at the level of genes. Genetic testing revealed nothing. Then we went into a clinical trial where we studied the gene and we got results,” she said.

To make matters worse, Leo and Colin received the same diagnosis as their sister a few years later.

An intense experience

Before leaving, the children made a list of activities they wanted to do on the trip. Mia wanted to ride a horse, Colin wanted to sleep on a train, Laurent wanted to drink juice on a camel.

Edith LeMay chronicles their trip as poignant in every sense of the word. “We are together 24 hours a day in situations that are not always easy. This increases tensions. Sometimes, we can travel 16 hours in a bus with the children without eating. There are many inconveniences. We learn to work together and it strengthens our bond,” says the mother of children aged 5 to 11. Said.

Although they are abroad, their reality is not unlike that of a family in La Belle Province. “We imagine it’s always fun while traveling. But the children get in a bad mood and argue. Everything that we can experience on a daily basis, we experience it, but in different places,” she said. In their best moments so far, M^me Lemay remembers their hot air balloon ride in Turkey.

Living in the moment

According to her, her children live day by day and do not worry about their future. “They don’t feel the urgency. We feel it,” she said.

The couple saved money for the trip and got a life boost. The company Sebastien Pelletier worked for was sold shortly after they left. “He had stakes. It gave him a good amount. Sometimes life throws you a punch, but it gives you something else on the other side,” she said.