Spokesperson

Jorane is the spokesperson for Le Phare since September 2021. A Québec performing artist in constant motion, Jorane is a remarkable musician and instinctive vocalist. A gifted instrumentalist and free-spirited composer, she has more than a dozen albums to her name and has received many awards and honours for her talents, including 16 ADISQ nominations and two Juno Award nominations. 

After studying classical guitar, she falls in love with the cello, which has never left her side. She later adds other instruments like the double bass and harp. In her early twenties, her career takes her around the world, where her music transcends language barriers. Jorane’s evocative music is a world all its own, where she lets her imagination roam free to conjure emotions and captivate audiences. Her vocals defy categorization and resonate with what is true, instinctive and deeply personal.

The story of Jorane and her family

I agreed to be the spokesperson for Le Phare because I know how important they’ve been for us and for so many others. On behalf of the most vulnerable children and their families who have to adjust their whole lives to support them, I want to spread the word about Le Phare. I want everyone to know about this wonderful organization and to give them the support they deserve.

“My partner Éloi and I are in our early 30s when we have our first child. The delivery goes really well and Manolo comes into the world surrounded by love. 

Just a few weeks after he is born, signs of his disease begin to appear. Manolo is only 20 weeks old when he is first intubated in the ER. Survival means being transferred by ambulance to CHU Ste-Justine, where we stay for many days. 

After two years of ambulance rides, hospital stays and worry, the diagnosis we fear comes: Manolo has a rare childhood genetic disease that shows up at a very young age. The symptoms cause all kinds of collateral damage and significant developmental delays.

At the same time, Manolo’s two little brothers are born. That’s right: twins! Needless to say, we don’t have much time to feel sorry for ourselves. 

It just so happens that we talk to a Dr. Clown who visits children at Le Phare. He has many wonderful things to say about this place. After going through the whole process, we are so relieved to find out that Le Phare has accepted Manolo. It feels like a ray of hope in our lives! We didn’t understand how much weight we were carrying on our shoulders until it was lifted for a few days.”