Categories: Volunteers

One man’s quest launches end of May

He says that Sonny is his real name but it sounds like a sobriquet he picked up along the way. Even after only speaking with him on the phone for a few minutes, it sounds entirely plausible that his friends were just trying to describe his disposition. The Edmonton man is as cheerful, warm and positive as they come, an accomplishment in its own right considering all that he’s been through and all the challenges he is about to face.

When Sonny Davis was five he was diagnosed with a neuromuscular disorder called Charcot-Marie-Tooth disease, a form of muscular dystrophy. It primarily affects his legs and his hands, leading him to live what he calls a ‘walk and roll’ lifestyle. Some days he feels good enough to ambulate with the use of his walking sticks but if not, he still has his wheelchair to get him from place to place. Come the end of May he’s going to put both to the test when he sets off on a trek the likes of which few ever attempt — from coast to coast.

The Marathon of Freedom is not necessarily a fundraising drive but rather Davis calls it ‘a Canadian coast-to-coast journey of awareness and inspiration.’ He’s doing it to show the world that he can and also to show others that physical limitations do not mean absolute restrictions. On his website he calls it a celebration, the realization of a fantasy he has held for a very long time.

“It was a childhood dream that had been planted when I was quite young but I never really got around to actually beginning to manifest the desire to do it until Beijing or non-Beijing happened,” he began, referring to how he missed out on participating in the 2008 Beijing Paralympics because it was determined that he had greater abilities for the specific classification that he was aiming for. After all of his hard training, he could only watch from the sidelines. Sonny has never met another wheelchair athlete that has muscular dystrophy.

“That was the pushover I suppose, into me asking myself other and wider questions around ‘what is this about after all?’ and ‘what is my purpose?’ and ‘what do I really want to do before I can’t?’ So here we go. This is it.”

Starting on May 30 — his 30th birthday — he will be leaving from Port Alberni, B.C. with the goal of travelling between 50 and 70 km each and every day. Considering the distance and the likely possibility of rough terrain and inclement weather, he estimates that he will end up at the east coast finish line as early as September.

Local team

Before the journey even begins, he and his team are hoping to find community support. Manager Paul Smith of Morinville’s Smith Music and Mark Mallon, the St. Albert man who is handling communications and publicity through Magi Creations, have requested help in finding corporate or private sponsorships to provide gas and two vehicles, one for the road team and another for the advance team. They are also looking for a donation of a laptop and camera to provide a wheelchair-based perspective to be broadcast on the Marathon website. Adding in wheelchair maintenance and the budget for the entire adventure totals about $40,000.

“I’ve got a message to share with as many people as I can,” Davis concluded. “Don’t stop moving. This is a marathon of freedom. When I look back on my life and all the things I was doing, I wasn’t acting disabled. In fact, I think I was doing all the things that went against what my doctor told me. These days, that has stayed with me. There hasn’t been any adversity to overcome. To me the only true disability is a crushed spirit.”

Marathon of Freedom

Starts at Port Alberni, B.C. on May 30.
Sponsorship requested for vehicles, gas, computer, camera and wheelchair maintenance.
To learn more or to help, call 780-965-3923 or visit www.marathonoffreedom.com
For other updates go to ‘Sonny and Chair’ on Facebook

Scott Hayes: Scott Hayes joined the St. Albert Gazette in 2008. Scott writes about the arts, entertainment, movies, culture, community groups, and charities. He also writes general news, features, columns and profiles on people.