Retinitis pigmentosa: A Quebec couple introduces their children to the world

Edith LeMay and Sebastien Pelletier decided to introduce their four children to the world when three of them were diagnosed with retinitis pigmentosa, a rare genetic disease that causes vision loss over time.

In an interview from Bali on the microphone of Benoît Dutrizac on QUB Radio, MI LeMay reports that three of her children are expected to be completely blind by middle age.

“We decided to show them the beauty of the world before they were no longer able to see it. The goal is to fill their visual memory,” she said confidently, adding that there is no cure to slow the disease.

“It’s a huge shock, but I really want to see it in a positive way. Yes, they have experiences, but everyone will have it. We have a chance to prepare ourselves and teach our children to be resilient,” she explained.

Mia, the eldest of the family, used to bump into walls and furniture at night when she was three. At first, the couple thought it was because her eyes hadn’t developed yet. However, after a series of tests, the verdict was issued.

“You can’t see what’s going on in the back of the eye. These are retinal cells that are dying. We had to see at the genetic level. Genetic tests didn’t reveal anything. Then we went to a clinical trial where the genome was studied and we got the results.”

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

intense experience

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

Edith LeMay describes their journey as intense in every sense of the word. “We are together 24 hours in circumstances that are not always easy. This increases tensions. Sometimes we can travel 16 hours on the bus with the kids without eating. There are a lot of inconveniences. However, we learn to work together and this makes our bond stronger” , said the mother, whose children are between 5 and 11 years old.

Although they are abroad, their reality is no different from having a family in Label County. “We imagine it’s always fun when traveling. However, kids wake up in a bad mood and will argue. Everything we can experience on a daily basis, we experience, but in different places,” among their best moments so far, MI Lemay remembers riding a hot air balloon in Turkey.

live 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 says.

The couple saved money for the trip and received a life payment. The company Sebastien Pelletier worked for was sold shortly before they left. “He had shares. She gave him a good amount of money. Sometimes life throws you a punch, but it gives you something else on the other side.”

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