The family that travels the world before their children go blind2022

 Parents who want to show their children the world before they lose their sight

 

 Five-year-old Laurent asks his parents, 'What does it mean to be blind?'

 He and two of his three siblings, Mia and Colin, would eventually lose their sight due to a rare genetic disease that affects the pupils of the eye.

 When these children were diagnosed with this disease, experts advised them to show them as many pictures as possible through books, so that they could record them in their memory forever: different places, animals, works of art.

 But this idea could not convince his mother.

 In an interview with the BBC, Edith says, "I said to myself: 'I'm not going to show them the books.' I will take them to see real elephants and real giraffes.

 What is disease?

 Edith explains that the disease, called retinitis pigmentosa, causes cells in the retina to slowly die.

Over time, Laurent, Mia and Colin will lose their sight and eventually become completely blind.

 Faced with this dire forecast, Edith and her husband, Sebastian, did not hesitate to leave their home and go on a trip with the children, who have so far taken them to visit six countries on three continents.

"We want to fill their visual memory, but we also want our kids to be a little stronger because they're going to have to be resilient and be very strong to survive," she says.

 It aims to prepare them to face the challenges ahead in life.

 Edith doesn't want her children to see the rare disease 'as a heresy or something terrible' but to think that 'this is their way in life.'

 The family has already visited Namibia, Zambia, Tanzania, Turkey, Mongolia and Indonesia

 So far these four brothers have gained the experience of visiting and living in remote beautiful places.

 'My favorite moment was my birthday when I flew in a hot air balloon', Laurent told the BBC, while his brother Leo considers the day they watched the waves in Bali (Indonesia) very special. Spent playing time with

 Parents have described their experiences in a personal blog on Facebook. The name of this page means 'the world through their eyes'.

 'Laurent has just asked a painful question: 'What does it mean to be blind?'

 

 My heart is racing and it's like my breath is stopping. But as much as possible I try to answer her questions with a smile.

 Why is there no cure for it? How do I cross the street? Will my wife also lose her sight?

 Tonight my heart is bursting, today I will bear this pain. And tomorrow we will try to get up and spend another day.