"Before my kids go blind": an amazing family trip around the world

Being parents is not an easy task, but being parents of sick and disabled children is doubly difficult.

A couple of parents who found out that three of their four children are sick and may soon go blind, took them on a trip that will fill their heads with memories and beautiful sights, and it's as exciting as it sounds

Voila system!

health

16/09/2022

Friday, September 16, 2022, 08:45 Updated: 08:57

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Here is a story that manages to be sad and happy at the same time: a Canadian family of six embarked on a year-long journey around the world before three of their children - a daughter aged 12, and the sons, aged seven and five - would lose their sight due to a rare genetic condition.

The parents discovered that their eldest, Mia Lamay-Pelletier, has degeneration of the retina, or in professional language - retinitis pigmentosa (the same disease from which Avichai from the older brother suffers) which may leave her blind in her 30s.

They discovered this after she started struggling to see during the evening hours.

The following year, her brothers Colin and Lauren were diagnosed with the same disease.

Their little boy is the only one of the children who is not sick.

Mother Edith Lamay, who works in finance in Quebec, where the family lives, said when the brothers were diagnosed that was the moment they realized they had to go on a world trip to fill their minds with "visual memories" before their sight deteriorated.

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The family went on vacation last March with no set itinerary and so far they have visited Namibia, Zambia, Tanzania, Turkey, Mongolia and are now spending a week in Indonesia.

They first planned to start a tour across Russia and China in 2020, but this was canceled due to the Corona virus.

The parents said that in addition to the bank of memories they are leaving for the children, they also wanted to show their children during the trip that no matter how hard life is, they are lucky to have running water at home and they can go to school.

Describing their outings on social media, the mother said it was wonderful to see the children reunited, but admitted it was "hard work" being with them 24/7.

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Atrophy of the retina - called retinitis pigmentosa, or RP in the professional language - usually appears in young people and the later the symptoms of the disease appear, the less severe it is and the slower the rate of progression of the disease.

The disease affects an average of one in every 4,000 people.

According to estimates in the world, there are over a million people suffering from the disease and unfortunately there is no treatment or cure for it.

The initial symptoms of the disease are difficulty in night vision and a decrease in the quality of peripheral vision, which causes difficulties in driving and walking in public spaces, and makes it very difficult to function in dark conditions.

Over time, the disease worsens, and also affects central vision, which manifests itself in difficulty reading and the ability to recognize people.

As for genetics and explaining how several children in the same family got sick - there are cases where the disease is recessive with a 25 percent chance that the disease will be passed on to each child, when both parents carry the defective gene.

There are cases where the disease is dominant with a 50 percent chance that the disease will be passed on to each child, when one of the parents carries the defective gene.

And there are cases where the disease is what is called X LINKED with a 50 percent chance that it will be passed on to sons only, when the mother carries the defective gene.

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The parents say that even on the trip the children do not forget the disease.

Mia knew about it since she was seven years old, while the young two only found out about it recently.

"My little one asked me, "Mom, what does it mean to be blind?

Can I drive the car?" He is five years old. But little by little he understands what is happening. It was a normal conversation for him, but for me it was heartbreaking," said the mother.

• health

• parenthood

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• parents

• Children

• A trip around the world

• eyes

• blind