Written by Kashish Sharma |Published : October 13, 2022 4:34 PM IST
A unique world tour undertaken by a Canadian family was recently reported by a media outlet. The heartwarming story turned many heads and sits perfectly for a day when the world is celebrating the sense of sight. The story was about a couple who are parents to four children. Among the four kids, three are affected by a rare genetic condition called retinitis pigmentosa which causes blindness over time. Knowing that their children might lose their vision by mid-life, the couple has decided to give them a bundle of visual memories that would last with them forever. The family is currently on a world tour and intends to capture as many visual sensations as possible.
The couple Edith Lemay and Sebastien Pelletier first noticed some vision troubles in their three-year-old daughter who was diagnosed with retinitis pigmentosa. Later, they found out that two of their sons were exhibiting the same problem. The parents have come to terms with the inevitable condition of their children. Instead, the family has become a source of inspiration to many with their taking this adversity as an opportunity to see the world. The couple not only intends to give their children visual memories of sceneries but also the sensation of different cultures across the globe.
The family maintains an active Instagram vlog, the flag bio of which reads: "Family of six, three going blind, a quest to fill their visual memory, a year of travel around the world. Let's see the beauty of this world."
Recently, the family shared some snaps from the island of Lombok in Indonesia where the children were seen spending some time on farms, helping to cut crops with a sickle, beating the rice and experiencing the harvesting processes. The mother recently struck an emotional note by acknowledging those who follow their adventures on social media. She shared her happiness of being able to capture the impressions her children are picking all along the adventurous journey.
A few people battling the condition have their stories written on the walls of the website Retina Australia, formerly known as the Australian Retinitis Pigmentosa Association founded in 1983. These individual stories explore the psychological impact of the genetic condition. A girl named Melanie describes her journey so far: "I look normal to people but have lost over 90 per cent of my vision due to the condition. I can't see distances or anything to the sides. Sunlight hurts and I rarely see much without strong contrast. I have very little depth perception which makes walking down stairs difficult."
Melanie also shared how she struggled with the decision of whether she wanted to have children and if she did, whether it was ethical.
Another girl Tania shared that she has autosomal dominant Retinal Pigmentosa. Her story read: "My grandfather, father and brother also have it. However, until my father was diagnosed at 45 years of age, we didn't realize that both he and my grandfather had it." She shared how with her dimming vision, she has stopped visiting concerts or movies as they are very painful for her eyes.
Retinitis Pigmentosa (RP) is a term for a group of eye disorders that can lead to gradual loss of vision. The rare disorder is genetic and is passed from parent to child. Only one out of 4,000 people suffer from the condition. About half of the people who have the condition have a family member who already has it. The retina is composed of two cells, rods and cones. The rods are present along the outer ring of the retina and regulate dim vision. In most people, the condition first affects the rods. People suffering from RP usually start with troubled vision at night and loss of peripheral vision (can't see the sides). Cones, the cells that regulate colourful vision are mostly centred in the middle and the condition affects them at the last. It is then that the person loses their ability to see colours.
The condition usually starts affecting the individual in early childhood. The time at which the symptoms appear and the time at which they get worse can differ from person to person. Most people affected by it lose their vision by early adulthood. Since the condition affects the rods first, the affected person might take longer to adjust to dark places. For instance, such individuals might take a lot of time in adapting themselves to a dark room like a theatre and might trip over things. They might also develop tunnel vision which means that they can't see to their sides without turning their heads in either direction. During the later stages of the disease, the affected person might have trouble seeing colours. In very rare cases, the cones might die first. Also, such individuals might find bright lights or sunlight very uncomfortable. Some individuals might also have a sensation of twinkling or flashing light.
Retinitis Pigmentosa is a progressive condition. While some might lose vision gradually, others might lose it more quickly and severely. While the symptoms of the condition might often mimic symptoms of other eye conditions. However, if a child or any other person in the family experiences the following symptoms, it might be a good idea to see a doctor-
Currently, there is no specific treatment for Retinitis Pigmentosa. However, it has been observed that wearing UV sunglasses can delay the onset of symptoms . Gene therapy has also emerged as a possible way to combat the inevitable condition caused by mutating genes.
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