Excellent news for the 11 million French carers who support an elderly, sick or disabled loved one: since this Thursday, October 1, 2020, there has been in France a “caregiver leave”, compensated and lasting three months.
This Thursday, dancer and choreographer Jean-Marc Généreux was interviewed at the microphone ofEuropean 1 : because, beyond his role as a juror in Dancing with the Stars, the Canadian is a “caregiver” for his daughter, Francesca, aged 21. “ My daughter has Rett Syndrome (…) She is 21 years old, she is with us, we have no intention of her going elsewhere, he explains. We will keep it with us (…) as long as we can.“
Rett syndrome: what is it exactly?
the Rett syndrome is a rare disease that affects between 40 and 50 children in France each year. This pathology specifically affects little girls since it corresponds to the mutation of a gene located on the X sex chromosome. This gene (it is MECP2 in 95% of cases) ensures the proper functioning of neurons and the nervous system .
To know. The diagnosis of Rett syndrome requires a genetic test to highlight the MECP2 gene mutation.
The first symptoms occur very early, between the age of 6 months and 2 years: we then observe a rapid regression of learning – the child stops talking, walking, his movements cease to be coordinated, he is not interested more to his environment, he can no longer sit down… Respiratory disorders, repetitive movements with the hands, epileptic seizures, scoliosis… may also appear.
“Taking care of our daughter was our priority”
“From zero to 18-19 months, [Francesca] had a normal evolution. Around the 20th month, she has a big regression that lasted about 1 year: she was saying 10 words. The last word she said was “daddy”remembers Jean-Marc Généreux.
“She walked: she no longer walks, she spoke: she no longer speaks. My little girl, she has the capacities of an 8-month-old child. When we say her name, she turns her head: it’s about the only gesture she can make. Otherwise it’s the diapers, theepilepsyhyperventilation (…). We gotta make her walk, we hold her, we try to stimulate her (…) You have to eat 3 meals a day, bath every day…“
The symptomatic treatments Rett syndrome allow a life expectancy of about 10 years. Advances in research (and in particular gene therapy, which consists of “replacing” the defective gene) could nevertheless allow a definitive cure of the disease in the coming years.
Source: Inserm
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