“What does it mean to go blind?” little five-year-old Laurent asks his parents.
He and two of his three siblings, Mia and Colin, will eventually lose their vision due to a rare genetic disease that affects the retina.
When the children were diagnosed, the specialists suggested showing them as many images as possible, through books, so that they could record them forever in their memory: landscapes, animals, works of art…
But this idea did not convince the mother.
“I said to myself: ‘I’m not going to show them in a book. I’m going to take them to see a real elephant and a real giraffe,'” says Edith in an interview with the BBC.
That was how this Canadian family decided to embark on a “a little crazy adventure” around the world for a year for children to treasure visual memories.
The illness
Edith explains that her children’s degenerative disease, called retinitis pigmentosacauses the slow death of retinal cells.
Over time, Laurent, Mia and Colin will end up losing their vision, “from the outside in”, until they go blind.
Faced with this dire forecast, Edith and her husband, Sébastian, did not hesitate to pack their bags and embark on a trip with the children that, so far, has already taken them to visit six countries on three continents.
“Yes, we want to fill their visual memory, but we also want our children to become a little stronger because, throughout their lives, they will need this resilience,” says the mother.
The goal is for the children to return home with all the emotional tools necessary to deal with the challenges that the future will bring.
Edith does not want her children to see her rare disease “as a curse, or as something terrible”, but to understand that “this is their path in life”.
So far, this path has led the four brothers to live valuable experiences in places as remote as they are fascinating.
“My favorite moment was my birthday because I flew in a hot air balloon,” Laurent tells the BBC, while his brother Leo remembers with special affection the day they spent together playing in the waves in Bali (Indonesia).
Among all these experiences, there is also room for moments of reflection, which the parents narrate in a personal blog on Facebook called “Le monde plein leurs yeux” (‘The world in his eyes’):
“Laurent just asked a painful question: ‘What does it mean to go blind?’
Despite the lump in my throat and my heart sinking in my chest, I keep smiling, trying to answer her questions as naturally as possible.
‘Why can’t we heal? How will I cross the street? Will my wife be blind, too?’
Tonight my heart is in pieces, letting the pain go away. Tomorrow we’ll pick up the pieces, lift our chins and keep biting at life.”
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BBC-NEWS-SRC: https://www.bbc.com/mundo/noticias-63051736, IMPORTING DATE: 2022-09-30 08:30:05
#family #travels #world #children #blind