What a difference a year makes.
In 2013, 11-year-old Stephie Gagnon was slowly being weaned off her medications that controlled her Juvenile Dermatomyositis – or JDM. Diagnosed when she was 6 ½ years old, it had been an uphill battle for Stephie and her family – which included around the clock care and uncertainty.
Stephie was unable to continue her figure skating lessons at the Extreme Edge Skating Club in Edmonton, Alberta, where her mom, Sheila Gagnon, is a Level 3 coach. The demands of the sport were too risky.
Last June, the doctors decided Stephie was ready to come off her power medications – which included prednisone and Methotrexate.
When her Dec. 18 appointment arrived, so did an early Christmas gift – Stephie was in remission.
“It was a great day,” said Sheila Gagnon. “A lot of high fives for sure.”
According to Gagnon, the disease can resurface at anytime and Stephie will be tested every six months. Stephie’s future looks as though it’s back on track.
“There’s no sign of the disease coming back,” said Gagnon.
Juvenile Dermatomyositis is an extremely rare auto-immune disease where the immune system attacks blood vessels and causes inflammation of the muscles. JDM affects three out of one million children each year and the disease has no known cause or cure.
Stephie’s Bike Tour raises funds for the Stollery Children’s Hospital Foundation and helps raise awareness about Juvenile Dermatomyositis. In it’s fourth year, the tour will take place on May 25 in Fort Saskatchewan, Alberta, with four different trail lengths. Last year, 600 people took part in Stephie’s Bike Tour. Since the inception of Stephie’s Bike Tour, it has raised $133,600 for the Stollery Children’s Hospital Foundation.
Gagnon said the Stollery has been, “Thankful and gracious” for their effort to raise funds on their behalf.
“They [the Stollery] like that we’re doing a healthy and active event.”
When a child has JDM, it’s important to keep moving. Stephie is no exception, according to Gagnon.
“She’s taking classes in dance – she loves to dance,” Sheila said. “And she’s into judo.”
“Strengthening is really good for her body condition.”