When Louise Boisvert’s daughter was four, she was diagnosed with acute juvenile idiopathic arthritis.
“I knew something was wrong, but when the doctors came up to me and said they ruled out everything else, I thought, ‘OK. Arthritis. That’s it’? She just needs some cold packs?'”she said.
The reality, however, was much more complicated.
The condition, she explained, is extremely painful and caused as the immune system ramps up against a phantom threat, creating fluid that attacks healthy tissue and ligaments.
The best treatment available, thus far, has been chemotherapy injections.
Louise administered them in the early days, and although she believes they’ve helped keep the condition in check, the nine years since the treatment started have been far from easy on Elise, who deals with drug side effects on top of the conditions that persist despite the condition.
Most recently, at age 13, the condition has led her to need two knee surgery that will hopefully stop the kneecap slippage that she faces.
“It’s just a lot for her,” said Louise. “Even I don’t really know what she’s going through.”
In an attempt to try, Louise recently hooked herself up to a suit that simulated the strain juvenile arthritis puts on a person’s body, and she said it was so heavy she couldn’t move.
After the photo-shoot she talked to her daughter about it, who pointed out that the suit didn’t offer a completely genuine experience. It lacked the electrical shocks of pain.
“She said she’d wire me up,” said Louise, laughing.
It’s the type of comment that shows her daughter has maintained a sense of humour, although Louise had a hard time finding words to explain her full death of character.
“She’s a warrior,” said Louise. “And for my husband and I, she’s our hero. Demi Lovato wrote a song called Warrior, and she sang the song over and over. It made her rise up and fight it….when she sings she forgets how much pain she’s in.”
That reliance on art to transcend pain might be something she learned from Louise, who is also an artist.
It’s also the vehicle that Louise is using to try and teach others about the condition, while raising funds to battle the condition.
Three years ago she started the Angel Awards.
It’s an event that juxtaposes music and art with educational speeches in an attempt to raise dollars and awareness.
Heading into the third year, she’s hoping that she’ll start seeing some real financial rewards for the cause. Alex Fong’s art will be on display, while with seasoned musicians John Delaney and Melina Moore will collaborate on a rock opera.
Ten other live performers will compete for the Angel Award and medical intel being offered.
And Elise will also be performing with the Anne McClymont Elementary School choir.
“She’ll be singing Warrior,” Louise said. “Last year she sang at the Angel Awards and she brought the house down… it really touches people’s hearts.”
While fundraising, educating and entertaining those who attend the event may seem like enough, Louise pointed out that there’s another side benefit.
“Over the last few years, someone has shown up with a child who has recently been diagnosed and didn’t know anyone with the condition, previously,” she said. Elise has mentored a couple, and the relationships forged have helped all involved.
Tickets are $60 per person, and that includes wine, applies and a pre show.
Seniors and children under 17 are shared $40, while a group of four costs $180.
For information on the May 30 event at the Rotary Centre for the Arts go to www.angelaward.ca