Ella Huot-Attia loves to dance. The 12-year-old, who uses a wheelchair, will be quick to correct anyone who says she used to be a dancer.
“I am still a dancer,” Ella said, interrupting her own mother during a Tuesday press conference at the Montreal Children’s Hospital.
But reaching the point where Ella can say that with confidence hasn’t been easy. She credits the hospital’s music therapy program for helping her.
“I love to dance but when I stopped it kind of broke me,” she said, “but when I started music therapy I learned to dance in my wheelchair and find alternatives to dancing.”
Some of those skills were on display Tuesday when Ella gave a heartfelt performance at the hospital of a song she’d written herself called Let The Sunshine In.
“It’s about taking the moments when you can because sometimes they can be very rare,” she said. “It’s very much from the heart and experiences that I’ve either hated or loved.”
Sitting in her wheelchair, tapping her feet and sometimes waving her arms, Ella’s voice filled the atrium as the crowd clapped along.
She dedicated the song to other kids at the hospital who, like her, might be experiencing pain and illness.
But it was written as a special thank you to the Sandra and Alain Bouchard Foundation for their $1-million gift to the Children’s music therapy program and to Montreal singer-songwriter Charlotte Cardin, who is the program’s new ambassador.
Ella was only six years old when she was diagnosed with episodic ataxia. It’s a rare genetic condition that causes problems with walking, moving and balancing. It also comes with bouts of nerve and muscle pain and numerous hospital stays.
Ella’s mother Anne-Marie Huot said it’s hard to pinpoint what sets the ataxia off.
“There’s no rhyme or reason to it,” she said, adding that anything from a bright light to stress can result in an episode.
The past year has been especially difficult, with Ella suffering from an unidentified auto-inflammatory disorder that is causing inflammation throughout her body.
“Her immune system started waging war against the rest of her body,” Huot explained.
Like her daughter, Huot is thankful for the hospital’s music therapy program.
“It’s been one of her salvations,” Huot said in French. “She loves when the music therapist Christelle Jacquet comes into her room. Ella’s favourite thing to do is belt out Disney tunes.”
Huot said that although Ella has always loved music, she has found new ways to incorporate it into her life.
“She loves to sing, write music, dance in her wheelchair and so much more,” Huot said.
On bad days, Huot added, “we know to play music for her. It soothes her.”
The Bouchard foundation’s $1-million donation will allow the program to extend its services and hire three full-time employees.