Lacombe native Natalie Buchanan and her partner Steve Gibbs are cycling from here to Sudbury, Ontario with the goal of raising both funds and awareness for a rare skin condition called Epidermolysis Bullosa (EB).
The duo are looking to connect with nature and the great outdoors as a means of making the most of what matters in life – including raising funds and awareness for DEBRA Canada and the rare genetic skin condition Epidermolysis Bullosa (EB) according to a release.
Buchanan, who was born in Red Deer, then lived in Mirror before settling in Lacombe for her growing up years, is affected by the painful condition (which depending on the amount of friction and activity) causes painful blisters and open wounds on her feet.
“For a long time growing up I never really thought I could do anything this grand, I would say,” she explained during a chat before the couple left on Wednesday. Buchanan, who recently wrapped up studies in advertising and graphic design at Humber College in Toronto, said she and her boyfriend had talked about doing a walk from Ontario out to the east coast.
“I told him that’s just something that isn’t feasible for me, even though he offered to pull me in a wagon,” she laughed. “It was a sweet though – but no.”
The pair ultimately decided that heading out on their bikes would be the best way to go, and hopefully less impactful on Buchanan’s condition.
“About a month later I got to thinking how I could make this possible for me – and I thought biking would be a good option.”
Supporters can follow their journey – which they plan on completing by early November, on Instagram with the handle @cyclingformore. DEBRA Canada is the only non-profit charitable organization in Canada committed to assisting its patient members affected by the condition.
The pair’s online fundraising page can be checked out at https://debracanada.donorpages.com/Donation2017/Cyclingformore/.
“We’re going to be wearing our DEBRA Canada gear, too. A lot of it will be word-of-mouth as well.”
For Buchanan, growing up included being somewhat limited in the type of physical activities she could be involved in.
But she was never one to let the condition stand in her way of trying out a whole variety of things.
“This adventure may take us a bit longer, and we will have to pace ourselves depending on how my skin (specifically my feet) are coping/holding up with the motion and potential friction from the pedaling motion. But I want to prove that EB does not always have to stop a person from living their life and going on an adventure.”
Epidermolysis Bullosa (EB for short), has been described as, “The most painful disease you’ve never heard of.” Globally, it affects one in 17-20,000 live births.
In its worst forms it causes the skin to shear at the slightest touch, causing painful, open blisters and wounds.
EB can mean a life of extreme pain, disability and it is often fatal in infancy in the Junctional Herlitz type. The youngest with EB are often referred to as ‘butterfly children’ because their skin is said to be as fragile as a butterfly’s wing.
Currently, there is no cure.
Buchanan was diagnosed around the age of eight. “I would get blisters really easily,” she said. “Other kids could play around the park and I’d go walk around the park and I would have these blisters and no one else would. I’d have blisters that would wrap around my toe – they weren’t your ordinary blisters.” Her mom and some of her siblings have the condition as well.
“Mostly it’s about being careful with things like heat, or if I’m wearing footwear that rubs more. I have to be careful of those things because they will just add to the friction and there is more potential for the blistering.
“There have been days when I’ve resorted to crawling around because I just didn’t want to bear walking on my feet at that point.”
She recalls being told as a youngster that swimming was something she could do. But that didn’t exactly click with her. “We (Buchanan and her siblings) decided that if we wanted to be active, we would go and play a sport and then the next day we’d plan to have a recovery day.”
Meanwhile, Buchanan recently accepted the title of ambassador along with other fellow Canadian EB patients including Jonathan Pitre (Russell, Ontario) and Deanna Molinaro (Stoney Creek, Ontario) via the charity’s Fund a Butterfly Ambassador Program.
The program involves the granting of a personal wish to an EB patient (adult or child).
The successful candidate then represents the charity as an ambassador sharing his or her story to inspire and empower other EB patients to pursue their dreams/goals in the face of adversity.
For Buchanan, she said she feels fortunate knowing that her condition could be worse than it is.
“If others (in worse condition) can fight through it, I have no excuse – I can go out and live and I don’t want to be held back because there is so much that the world has to offer. I don’t want to miss out and sit on the sidelines.
“Along with proving that I don’t have to hold myself back because of my EB, I would be overjoyed if I could inspire even one other person to do the same. It’s hard watching from the sidelines and I’m sure a lot of other EB patients feel the same way.”
For more on EB and DEBRA Canada, visit www.debracanada.org.
To make an online donation to DEBRA Canada in honour of the @cycleformore journey, visit: https://debracanada.donorpages.com/Donation2017/Cyclingformore/