Home » A Canadian family travels the world before the children go blind; know what is retinitis pigmentosa, a rare and incurable eye disease

A Canadian family travels the world before the children go blind; know what is retinitis pigmentosa, a rare and incurable eye disease

by Naomi Parham

After three of their four children were diagnosed with retinitis pigmentosa, Edith Lemay and Sébastien Pelletier decided to take them around the world to fill them with incredible “visual memories”.

New Delhi: The Lemay-Pelletier family is literally on the trip of a lifetime.

For six months, Edith Lemay and Sébastien Pelletier have been traveling the world with their four children to help them discover unforgettable sites around the world before three of them become blind.
Pelletier’s eldest daughter, Mia, was diagnosed with retinitis pigmentosa, an incurable degenerative hereditary retinal disease.

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Besides Mia, 11, two other children – Colin, 7, and Laurent, 5, also carry the same gene, meaning they would also eventually lose their sight. Leo, 5 years old, doesn’t have the gene.
The family has so far traveled to the most exotic places including Namibia, Bali, Mongolia, Zanzibar and Turkey.
“I want to show them how beautiful the world is, so that’s what we’re doing right now,” Lemar told Global News.

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The parents, although heartbroken, decided to show the beauty of the world to their children and rather than brood over a non-cure, chose to live in the moment. “The hardest thing to accept is not being able to do anything,” she said.

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The Pelletier family in Ölüdeniz, Turkey.

What is retinitis pigmentosa?

Retinitis pigmentosa is a group of rare eye diseases that affect the retina. The condition causes cells in the retina to slowly break down over time, leading to loss of vision.

The condition is a genetic disease that people are born with and don’t yet have a cure, but across the world there are several vision aids and rehabilitation programs that help people get the most out of their vision.

What are the causes of retinitis pigmentosa?

at the National Eye Institute, Spain, the condition is caused by faulty genes that are mostly from the retina. These genes are passed from parents to children.

Sometimes this genetic condition also occurs as part of other inherited conditions such as Usher syndrome, which causes both vision and hearing loss.

What are the symptoms of retinitis pigmentosa?

When the disease begins to set in, the most common and earliest sign of retinitis pigmentosa is loss of night vision. Doctors say the disease begins in childhood itself and parents would notice that their children have trouble adjusting to dim lighting.

It also causes one side of vision to be lost, so most people who start to get retinitis pigmentosa stop seeing things out of the corner of their eye.

Some people with RP lose their sight faster than others. Eventually, most people with RP lose their side vision and central vision.

Disclaimer: The tips and suggestions mentioned in the article are for general informational purposes only and should not be construed as professional medical advice. Always consult your doctor or dietitian before starting any fitness program or making any changes to your diet.

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