Rather discreet about her private life, the musician Jorane recently made a publication on her social networks to mark the birthday of her son, Manolo, who suffers from Dravet syndrome. For many years, the family was able to count on the help of the Lighthouse, Children and Families organization. She agreed to talk to us about her situation.
The life of a touring musician is difficult to reconcile with a stable family life. Fortunately, Jorane and her partner, Éloi Painchaud, who is part of the Salebarbes group, can count on a caring and very present entourage. “We need help, it can’t be done alone,” she recently told us. We have lots of extraordinary people around us, which means that Éloi, with Salebarbes, and I can be on tour in different places in Quebec or elsewhere, and everything goes well.
The musician has rarely spoken about the condition of her son, Manolo, who was born with Dravet syndrome, which notably causes prolonged epileptic seizures and delayed mental development. She recently made a post on her social networks to thank the organization Le Phare, Enfants et Familles, which has helped the little family a lot in recent years. “Manolo was admitted when he was 4 years old, he is now 18. But the first four years of his life, we would have needed the Lighthouse so much, even then. We needed help from the start.
Those whose child has received a diagnosis (the Lighthouse receives children suffering from an illness limiting life expectancy, as well as their families) can immediately ask for help at the Lighthouse, Children and Families.”
Help offered to families
If she opens up about her situation, it is firstly because upon reaching the age of majority, Manolo will no longer be able to benefit from the help of the organization, which mainly takes care of children. She therefore wanted to thank them by highlighting their contribution. “I think it’s a pivotal period, a moment where Manolo’s 18th birthday meant something special. But the reason I hadn’t talked about it before was because I didn’t know the adventure that awaited me by having Manolo. Talking about certain things before going through all the difficulties is sometimes a little complicated. We also don’t want to use interviews to do therapy.” But she now wants to help families who find themselves in this situation, by explaining to them that they must keep hope. “The goal of talking about our family situation is to give energy to people who are going to experience this situation, who have just had a diagnosis. Rather, I want to talk about my situation to uplift people, to show them that there is hope. If this is what awaits you, there is help available, there is a way to get through it, we can get through it.” She also hopes that parents who find themselves faced with a diagnosis like Manolo’s or another disability can have the reflex to quickly ask for help, and that they know that there are resources around them to accompany them in this new life.
In music
Although she is less present in the media world, Jorane continues her intense musical career. She recently composed a symphony for choreographer Rhodnie Désir’s new production, which was performed by the Orchester Métropolitain, and she is also working with American choreographer Rebecca Lazier. She also collaborated with Felix & Paul Studios by writing music for an immersive series on the International Space Station. “I’m working on lots of projects, whether it’s video games, contemporary dance or writing a next album. I am currently on tour in Quebec, and things are emerging to go abroad next summer.
All his projects and tour dates are at jorane.com
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