After learning their kids would lose their sight to a rare disorder, family takes a world tour to give them a lifetime of visual memories.
May 16, 2023, 9:05 AMA family of six spent the last year traveling the world together to take in as many sights as possible before retinitis pigmentosa, a rare genetic disorder, causes total vision loss for three of the four children.
After learning the news four years ago that three of her four kids were diagnosed with the disorder, it took some time to come to terms with what it would mean for their family, Lemay said.“At first it’s denial, you think, you know, ‘It’s impossible. Nobody in my family has that. And then you get angry. You know, ‘Why me? Why does this happen to me? It’s not fair.’ And then comes sadness, you feel sorry for yourself, for your family.
The eldest, 12-year-old Mia, said her favorite memory so far was riding in a hot air balloon in Turkey.Leo, 10, is the only one of the siblings without the diagnosis. There is currently no known cure or treatment to slow down the disease. So far, the parents said they haven't seen any changes to their kids’ vision, besides not having the ability to see in the dark since they were born, Pelletier said. Total loss of vision is expected to occur in midlife.Meanwhile, the parents have made it their mission to teach their children resilience, being grateful and how to adapt to new situations, Lemay said. She wants them to “focus on the positive in their life.
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