Model parents. We can define them like this when a three of their four children was diagnosed with the retinitis pigmentosa, a rare genetic condition that causes vision loss or decline over time. So Edith Lemay and Sebastien Pelletier decided to take their children around the world to fill them with amazing visual memories.
A year around the world to fill them with visual memories
Their my daughter he was only three years old when Canadian couple Edith Lemay and Sebastien Pelletier first noticed that he had vision problems. A few years later, they first took her to one specialist who diagnosed her with retinitis pigmentosa, a rare genetic condition that causes loss or decline of vision over time. At this point, Lemay and Pelletier, who have been married for 12 years, noticed that two of their children, Colin e Laurent, they had the same symptoms. Their fears were confirmed when the boys were diagnosed with the same genetic disease in 2019. The only one who survived for the moment was the other son Leo. “There is nothing you can really doSays Lemay, explaining that at the moment there is no cure or effective treatment to slow the progression of retinitis pigmentosa. “We don’t know how fast it will go, but we expect them to become completely blind by middle age“, he has declared.
Upon hearing the news, the couple focused their time on helping their children develop the skills they needed to orient yourself in life. When Mia’s specialist suggested filling her with “visual memories,” her mother realized there was a truly amazing way they could do just that for her and the rest of the children. “I thought: I’m not going to show her an elephant in a book, I’ll take her to see a real elephant. And he will fill his visual memory with the best and most beautiful images I can ”.
“They will have to be resilient for life”
They started their journey in Namibia, where they got close to elephants, zebras and giraffes, before heading in Zambia and then in Tanzaniato then fly in Turkey, where they spent a month. The family then went to Mongoliabefore moving to Indonesia. “We are really trying to show them things they would not have seen at home and make them have the most incredible experiences,” the parents revealed. In addition to witnessing wonderful views while their eyesight is still relatively strong, the couple are hoping the trip will help the children develop strong ability to coping. According to National Eye Institute part of the U.S. National Institutes of Health, an agency of the U.S. Department of Health and Human Services, symptoms of retinitis pigmentosa usually begin in childhood, and most people eventually lose most of their vision .
“They will need to really be resilient for lifeLemay adds, noting that Mia, Colin and Laurent will constantly have to readjust as their vision deteriorates. “While Mia, now 12, has been aware of her condition since she was 7, Colin and Laurent have found out more recently and are starting to ask tough questions.” “My little one asked me, ‘Mom, what does that mean to be blind? Will I drive a car? ‘ – Lemay continues -. He is five years old. But slowly, he’s figuring out what’s going on. It’s a normal conversation for him. But for me it’s heartbreaking“. “No matter how hard their life is, I wanted to show them that they are lucky only to have running water in the house and to be able to go to school every day with nice colored books,” concludes the mother. The father instead remains confident that the three children may never go blind. “Let’s hope the science find a solution. We cross our fingers for this. But we know it could happen, so we want to make sure our kids are equipped to face these challenges. “