2024-04-14 12:17:00
Around a hundred Belgians suffer from what is called locked-in syndrome. The person then finds themselves in a sort of coma, but well aware of what is happening around them. Bénédicte is affected, she now manages to communicate.
It’s a daily struggle, locked-in syndrome. Victim of a stroke 7 years ago, Bénédicte became mute and quadriplegic. This mother of two children remains 100% dependent on her husband.
Several pieces of equipment have already been subsidized, such as its chair equipped with an eye recognition tablet. “It’s a kind of computer on which there is infrared detection which will detect its eyes and make a relay on the screen to actually target letter by letter. Like when you actually write a text” explains her husband.
But for her primary needs, no human help is provided, sometimes forced to stay alone for long hours at home. For Alexandre, her husband, “administering water via his gastrostomy is a nursing gesture“.
“My wife stays in her own four walls all day”
Yet, “the nurse doesn’t know how to come X times a day. And so it is the close caregivers and those around them generally who carry out this act.“. Bénédicte and her husband therefore decided to open their non-profit organization “Balis”. “The worst part is not being able to eat or drink when I need to. It is impossible for me to go to the toilet or go out for a walk or by car. My life is therefore limited to waiting for a human presence” she testifies.
Other countries like France offer it 24 hours a day, but not in Wallonia. For Alexandre, what is missing in Belgium, “it is someone who is there and who makes it possible to satisfy primary needs, secondary needs and to bring these people back to life and reintegrate them into society“.
A person currently suffering from locked-in syndrome, who lives at home, “remains in his own four walls all day and must wait constantly to satisfy his basic needs“.
Together, Bénédicte and Alexandre continue their journey with love and determination. In Belgium, around a hundred people suffer from locked-in syndrome.
illness sick health Belgium Society
1713102685
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