Variable disability
By Camille Frati, Lex Kleren, Misch Pautsch Switch to French for original article
In theory, the special supplementary allowance is granted to children with a disability of more than 50 per cent compared with a child without disability. In practice, the Children's Future Fund follows a very restrictive policy that is sometimes difficult to understand.
Matilda* (name modified by the editor) is an adorable little girl, 3 and a half years old, happy and already dressed to the nines. However, her daily life is nothing like that of her crèche friends. Matilda was born with congenital polymalformative facial syndrome. "This means that she has several facial malformations, " explains her mum Alice*. "She's missing an ear and part of her jaw, and she has a cyst in her eye between the white of her eye and the coloured iris." A syndrome discovered only at birth. "The doctors think that the foetus has had a vascular accident and in these cases anything that develops at the time doesn't develop. In Matilda's case, it must have happened around five to six weeks when everything is developing: the kidneys, the heart, the genital system, the brain…" The first weeks and months of Matilda's life were therefore devoted to identifying invisible malformations. "When she was three days old, she had an ultrasound scan of her heart, brain and kidneys… It was very thorough. We didn't know whether she could see or hear, whether she would have to be on dialysis for the rest of her life or whether she would be mentally retarded. The first year of her life was pretty tough."
Fortunately, it turns out that the little girl's organs were not affected – "the heart was, but it went away as she grew". "Today Matilda is deaf in one ear. She has a tiny bit of hearing because she doesn't have an ear canal. She has astigmatism. And as far as her jaw is concerned, it's difficult to define the consequences before a certain age, as all children have difficulties with pronunciation when they're young". It's her hearing problems that have the biggest impact on Matilda's life. "A loud sound is immediately aggressive for her, and the fact that she only has one ear means she can't analyse noises to focus on the one that's important to her. She is assailed by all the noises and sounds, and it quickly becomes tiring and stressful for her. You can see this because she quickly blocks her ears."
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