In 2009 when Stephie Gagnon was 6 ½ years old, her world changed from relaxed skating lessons to being rushed to the Stollery where she was diagnosed with a life-threatening auto-immune disease.
Her mom, Sheila, said Stephie began to exhibit vague symptoms, however, at the time, there was always an explanation. Stephie’s extreme tiredness was due to overdoing it in sports or school. A rash on her hands was blamed on a reaction to soap since it was around the time of H1N1.
“At the time, we had a reason for everything.”
However, the symptoms persisted.
“When we’d go shopping, she’d say she wants to be in the cart, and that was unusual,” said Gagnon.
When the Gagnon’s saw Stephie’s toes were swollen, rush her to the Stollery, in Edmonton, Alberta. Within three hours, Stephie was diagnosed with Juvenile Dermatomyositis [JDM].
“I went in that day and we went in for a prescription,” Gagnon said. “Never in our mind would she be diagnosed with a rare condition.”
JDM wasn’t on the Gagnon’s radar, nor did they know what it was. At the time of her diagnosis, Stephie couldn’t be left alone and required full-round the clock care. The doctors weren’t sure how far the rare auto-immune disease had progressed.
“You really have to put your faith in the doctors who are leading the show,” Gagnon said.
Gagnon has high praise for the doctors, nurses and staff at the Stollery.
“It’s a hospital you want to hold on to,” she said, adding the Gagnon’s were never in the dark about Stephie’s condition.
Gagnon says there isn’t a cure for the disease, only strong doses of medications, such as prednisone and Methotrexate. Today, Stephie is doing well, according to Gagnon, and being weaned off the medication as she nears remission.
The disease tends to appear in girls more often than boys, the age of diagnosis for girls is usually six to 10, boys tend to be diagnosed earlier. The disease can also develop later in life, primarily in women aged 40 – 60. For now, Stephie is looking forward to holding a fundraiser for JDM on May 26: Stephie’s Bike Tour. Over the last two year, 600 people have taken part in the tour. All proceeds go directly to the Stollery Children’s Hospital Foundation.
Even though her mom is a Level 3 figure skating coach at the Extreme Edge Skating Club, Stephie hasn’t returned to the ice because of the demands of the sport. She keeps active with other activities, such Judo, dancing and, of course, biking.
“I don’t think this disease has set her back,” said Gagnon.
Recently, Stephie was honoured with the Queen Elizabeth II Diamond Jubilee for raising $95,000 for the Stollery, helping in the advances to JDM and promoting healthy living. Stephie was nominated by the Gagnon’s MP Tim Uppal, who told the family he’d been following the Bike Tour on Facebook.
“[He said] ‘I just thought she was a very worthy candidate.”
For more information about Stephie’s Bike Tour: