An upcoming Fort Saskatchewan event intends to teach local residents about a rare disease while showing them the goodness in both regular exercise and an Edmonton pediatric health-care facility.
Stephie’s Bike Tour started two years ago and has already grown to be such a popular fundraiser for the Stollery Children’s Hospital Foundation that it has been recognized with a major award.
Stephie Gagnon was six in 2009 when she was diagnosed with juvenile dermatomyositis, an extremely rare autoimmune disease that affects her joints, muscles and skin. Her treatment requires vigilance to health and regular check-ups.
“It could lead into their internal organs,” explained her mother Sheila.
“She’s in the Stollery quite a bit, just for assessment and adjusting her medicines but she’s doing excellent. I definitely credit it to the doctors. The doctor was able to diagnose her within two hours and start the aggressive treatment.”
“We recognize how fortunate we were that the Stollery doctor was able to recognize this disease so fast and get immediate treatment,” Sheila continued. “I 100 per cent believe that she’s doing so well today because of the quick intervention. We found ourselves repeatedly just saying thank you, all the time.”
Only a few children in a million are diagnosed with the disease each year. It has neither a known cause nor cure but the Gagnons are hopeful that Stephie, now nearly 10, can get into remission.
“We’re getting close to being off all her meds. Stephie has regained all her strength. She is able to participate in sports and be a normal kid.”
The family keeps Stephie active and stays active with her. Together, they exercise a lot, play a lot and have a lot of fun. Above all of that, the more they move, the more Stephie can keep moving.
“With the amount of time that we have spent with her doctors in the rheumatology clinic … we decided we would organize a fundraising event for the Stollery just as our way to say thank you and to give back,” Sheila said.
So far, they’ve given back more than $95,000 to the Stollery Children’s Hospital Foundation over the last two years. They’ve done this through Stephie’s Bike Tour, an active fundraising event that has already received attention and praise from the community and community leaders. The event’s mission is also to put a spotlight on the disease and promote active living too.
Because of this health promotion, the tour received a health award at the National Philanthropy Day Awards last November.
The event raises funds for specialized equipment, medical education, research into new treatments, and specialized programs for patients.
The third annual Stephie’s Bike Tour for the Stollery takes place Sunday, May 26. It starts at the Dow Centennial Centre at 8700 84 St. in Fort Saskatchewan. There will be four tours of varying length from 60K to 5 K, starting at 8:30 a.m. and going until 1:30 p.m. The 5K tour is not a race and is intended to encourage families to ride and therefore to be more active together on a regular basis.
Organizers hope to surpass 300 riders for this event. All proceeds will go to the Stollery Children’s Hospital Foundation.
“The event is definitely growing greater out to the Capital region,” Sheila said. “I believe that it’s just a great way for people to say thank you to the Stollery. It’s a healthy, active event where they’re giving back to a hospital that their child may have used.”
The Gagnons also participate in the ride as a family.
“Don’t just send your child to this event. Come as a family because kids are more active if their parents are involved with them,” Sheila said.
Registration is now open for participants. Volunteers and sponsors are also needed.
Call 780-686-5410 or visit www.stephiesbiketour.com.
