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Defeat Duchenne Canada: The loss of an incredible volunteer, Ed Coxworthy

June 17, 2020

Defeat Duchenne Canada has lost one of its greatest supporters.

The man we nicknamed “The King of Newfoundland,” Ed Coxworthy, the motorhome driver during the cross Canada journey in 1998-99 passed away Sunday, June 14, 2020, at his home on Bell Island, Newfoundland. Ed was 80 years old.

He may have had a gruff exterior, but inside Ed had a heart of gold and would have done anything to help Defeat Duchenne Canada and all the boys with Duchenne muscular dystrophy.

It was probably a bit of luck mixed with divine intervention that brought Ed to Defeat Duchenne Canada (pictured here, far right). For a long time, he was in the background of the story, which began with a letter written in London and the message received on the ferry from Portugal Cove to Bell Island.

My friend, former broadcaster Peter Garland, who was born and grew up in Newfoundland had written to a magazine called the Downhomer, a good-news magazine with content that celebrates life, and all the good things that go with it. The magazine is a link to home and is mailed to Newfoundlanders all over the world.

There on page 57 was Peter’s letter urging Newfoundlanders to support Defeat Duchenne Canada and a determined dad who was about to begin his cross Canada journey at the little harbour at Quidi Vidi, on the edge of St. John’s, Newfoundland.

Ed’s wife Kay, who had just joined the staff at the Downhomer was reading the latest edition of the magazine as she took the ferry home to Bell Island from the mainland.

The next day Kay went into the office of the magazine’s editor and said to him, “We’ve got to help this man,” and the editor said, “You make it happen girl!” That set the wheels in motion.

For the next four months, Kay Coxworthy and Peter Garland’s sister Joanne Dawson, who lives in Summerford, Newfoundland, worked tirelessly by telephone, by letter and by fax (email was pretty much unheard of in those days), to find us places for to eat and sleep all across Newfoundland in those early days on the road.

It wasn’t until the night before our journey began that Ed’s wife Kay and Joanne finally met each other in person.

It was during a traditional screech-in, where come-from-aways—or CFA’s—are invited to recite an age old saying, eat a piece of bologna (also known as a Newfoundland steak), kiss a cod and then take a shot of Screech, a potent West Indies rum. If you were not born on the rock, then you become an honorary Newfie by being officially ‘screeched in.’

On their way to the screeching-in, Kay turned to her husband Ed and said, “You know they’re still looking for a driver for part of Newfoundland.” Ed, who had worked as an underwater welder, a lobster fisherman, a seal hunter, a transport truck driver and had served Canada overseas as a Peacekeeper in Cypress, said to Kay, “Don’t be getting me involved in any fundraisers. I’ve done my part for the country, thank you very much.”

On their way home, after listening to what I had to say about Jesse and boys with Duchenne and why I was about to try to walk across the country to raise awareness and dollars for research, Ed said to Kay, “Well, maybe I’ll go for a week.” Ten months later he went home.

For the 286 days we were on the road, Ed’s humour made tough days seem like fun. His one-liners were classics.

I remember a day in the Maritimes when Ed came back from the grocery store and he looked at me and said in his unique Newfoundland way of speaking, “By the Jesus Johnny, the deli in that grocery store, they cut that meat so thin—it only had one side.” And so it went, day after day with my friend Ed Coxworthy, the unsung hero I was happy to know for the next 22 years of his life.

He was listed as the motorhome driver, but he was also our cook and I will never forget the dark, soaking wet night we had our motorhome Thanksgiving dinner of ham, turnip, carrots, cabbage and yellow peas pudding, prepared by a man who six-months earlier had said, “Maybe I’ll go a week.” He probably never knew it was him I gave thanks for on that day.

The stories about Ed Coxworthy became part of the magic of Defeat Duchenne Canada. Grit, perseverance and a remarkable dedication were all in the gruff exterior that housed a heart of gold.

This is what being Canadian and taking action in caring for others looks like. I hope you can see a bit of yourself in Ed’s eyes and I hope you too will do all you can to make a difference in the lives of others—just the way my friend Ed Coxworthy did.

Thanks for everything, Ed. Rest in peace and I’ll see you somewhere down the road.

– John Davidson, Founder of Defeat Duchenne Canada