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Stephie's Bike Tour back in biz

Sturgeon County girl now 11 and in remission from rare disease

By: Scott Hayes

  |  Posted: Wednesday, Apr 23, 2014 06:00 am

GOING STRONG – The Gagnon family created charity event called Stephie's Bike Tour after their daughter was diagnosed with juvenile dermatomyositis.
GOING STRONG – The Gagnon family created charity event called Stephie's Bike Tour after their daughter was diagnosed with juvenile dermatomyositis.
APRIL BARTLETT/St. Albert Gazette

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It looks like the weather keeps getting better for Stephie Gagnon. The young Sturgeon County girl was only six when she was diagnosed with a life-threatening disease in 2009. Today, however, she is in remission from juvenile dermatomyositis and as excited as any 11-year-old for a beautiful bike ride.

Her mother Sheila is the organizer of the upcoming fourth annual Stephie's Bike Tour. She’s hoping that more and more people will get behind the event. The Fort Saskatchewan-based fundraiser has brought in more than $133,000 for the Stollery Children's Hospital.

If it weren’t for the Stollery, things would be a lot different for the family. In addition to offering treatment, the medical professionals at the children’s hospital showed the family behaviours and activities to help keep Stephie’s disease at bay. It had to do with good nutrition, exercise and living stress free.

“Stephie, at an early age, was learning about the benefits of healthy, active living. Yeah, there was some down points, for sure, and lots of pain and crying but at the end of it, we’re a closer knit family and living a healthy, active lifestyle. That was through the assistance of the Stollery helping us to know that’s important,” Sheila said.

The Stollery, she emphasized, was with the family every step of the way. Now, the family just wants to pay the staff back by helping with this fundraiser that also encourages families to be active and healthy together.

The extremely rare autoimmune disease affects children’s joints, muscles and skin, and can also go into their organs. Only a few children in a million are diagnosed with the disease every year and it has neither a known cause nor cure.

Sheila said it caused an excruciating array of muscle pain, fatigue and loss of strength – symptoms that were tough to alleviate, especially since the young girl had to stay active in order to keep her body working. Exposure to the sun was forbidden and the girl must still be careful about it, even while in remission.

“For Stephie, walking was difficult … going up and down stairs was a challenge,” she continued. “She was pretty textbook: four years to get into remission. That’s a normal timeframe. Some kids never get into remission and they battle this their whole lives.”

Stephie’s treatment involved heavy doses of steroids that made a serious impact on her weight, pushing her from 43 pounds to 75 pounds in five weeks.

“That’s an adjustment for a child who’s physically weak,” Sheila said. “She was at a high risk of getting infections, which then would trigger the disease. For three years, she was somewhat isolated. She did still attend school.”

For all of these struggles, the family rallied around as many of the good things as they could. They figured that at least the whole family was learning how to be healthy in their bodies and as a family unit.

“Her specialist insisted she had to be on a very strict healthy diet. We kept thinking, ‘Wow! At six years old, Stephie is learning how to eat incredibly healthy and so are her siblings.’ What a great thing.”

The annual event draws an average of 300 participants from all over Alberta. It offers a few options for riders of various experience levels with 5K, 12K, 45K and 85K routes.

Registration is now open for participants. Volunteers and sponsors are also needed.

There will be a barbecue and special registration day on Friday, May 2 at the Fort Saskatchewan Sobey’s from 4 to 6 p.m. People can get a hot dog, bag of chips and a pop for a $5 donation with all proceeds going to the Stollery Children's Hospital Foundation.

As well, the first 50 children aged 10 and under who register in the Family Fun 5K bike tour will receive a safety bike flag.

All tours start and finish at city hall in downtown Fort Saskatchewan.

For more information or to register, please visit www.stephiesbiketour.com.

Call 780-686-5410 or visit www.stephiesbiketour.com.


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