Caregiver leave: Jean-Marc Généreux tells about his fight for his disabled daughter

TESTIMONY

This is a measure that concerns 11 million French people: from Thursday, caregivers who support an elderly relative, sick or disabled, will now be able to benefit from compensated leave of three months.

The Canadian Jean-Marc Généreux is in this situation, because his daughter Francesca, aged 21, has a rare genetic disease, Rett syndrome.

On Europe 1, the former juror of

explains why his life has been turned upside down by this serious pathology and how necessary it is to support people who help their loved ones.

"Diapers, epilepsy, hyperventilation, apnea…"

"From birth to 18-19 months, she had a normal development", says the dancer and choreographer.

"After the twentieth month or so, she had a big regression that lasted a little year. She said ten words. And the last word she said was dad. She was walking, she is not walking anymore. was talking, she is not speaking. My little girl has the abilities of an 8 month old. She turns her head when someone says her name, but that's about the only gesture she can make. Otherwise, this are diapers, epilepsy, hyperventilation, apnea, mild scoliosis… We take care of her, with three meals a day, daily bathing and constant hygiene. "

>> Find Europe Matin in replay and podcast here

However, Jean-Marc Généreux insists on his will not to "put it in people's hands" and to consider the need of relatives to help sick or disabled people themselves: "It is difficult for us to 'imagine that she has the same attention that we can give her, with the same emotion, "says the host.

"I have enormous respect for people who give their lives to strangers, but we didn't want to overload the system. So I think it was our priority to take care of our daughter."

A career as a couple sacrificed

Helping a disabled loved one requires reorganizing all of their days, activities and passions.

"There, I speak to you and I find it almost not good because it is my wife who does so much for my daughter", assures the dancer, who hosts Saturday evening a new show on France 2,

.

"Me, I do the big mop between a radio studio, a TV studio, the cinema ... But I could never do that if my wife doesn't do what she does. When you see me on TV, that means my wife is even more in combat. "

Faced with the disease, Jean-Marc Généreux and his wife made several sacrifices for Francesca's daily life: "It ended my career with my wife. We had a show and we would probably have danced our whole life, but my wife has given up on his dance performances, "he says, moved.

"I had the perfect partner. I'm a pianist without a piano. I can play pretty if I want, but I danced because I loved this woman." 

"Still a lot of work"

The Canadian choreographer therefore very favorably welcomes the entry into force of this compensation for caregiver leave to support families: "This is a big step forward and I am so proud that governments are looking into this issue. People think that it is. It goes without saying that yes, you have to take care of your mother or her child. But it is not always like that. We do not always have the physical or economic capacity to be able to do it. What the government did here, it's wonderful. It should also serve as an example for several other countries which have not followed suit. "

However, Jean-Marc Généreux considers "that we still have a lot of work" on this question: "These children, these parents, these people are part of our society. We cannot look aside."