In 1986, John Davidson and his wife, Sherene, heard news that would change their lives forever.
Their middle son, Jesse, then five-years-old, had been diagnosed with Duchenne muscular dystrophy, a rare and fatal muscle disorder affecting children, with the vast majority of those diagnosed being boys. Duchenne, characterized by a progressive muscle weakness, currently has no cure.
John and Sherene were determined to defeat Duchenne.
“We knew it took research, and that research took a lot of money,” Davidson said. “We also knew there wasn’t much being done.”
He stepped up, promising Jesse he would do everything he could.
In 1995, Davidson left behind his successful career in broadcasting to launch “Jesse’s Journey,” which began with Davidson pushing Jesse in his wheelchair across Ontario, and inspired his solo walk across Canada.
“I faced the toughest decision of my life and did what I felt I had to do: Refocus and set out to make a difference.”
And he did. To date, Jesse’s Journey, now Defeat Duchenne Canada, has raised more than $16 million to support projects around the world. It is the only Canadian charity solely funding Duchenne muscular dystrophy research. John and Jesse’s early efforts continue to offer countless other Duchenne families hope and support.
Davidson is one of 18 extraordinary individuals upon whom Western is conferring honorary degrees during spring convocation.
Whispers in the wheat
The idea for Jesse’s Journey came with poignant beginnings, and “when I was walking more than ever and Jesse was losing his ability to walk,” Davidson said.
Davidson’s walks stretched from a drop-off point in Ilderton, Ont., across more than 20 kilometres of a countryside road back to his home in London. Davidson still recalls the one quiet moment that set things in motion.
“I remember the wind moving softly through the wheat fields just south of the Ilderton fire hall, and suddenly wondering if we could ever turn ‘this walking thing’ into something,” Davidson said.
The idea went away just as fast as it came. Until it happened again. And again.
“The third time it happened I thought, ‘I think somebody’s trying to tell me something.’”
Realizing he needed to do something big, “beyond bake sales and car washes,” Davidson approached Jesse with a plan to push him across the province in his wheelchair to raise awareness and funds.
At first, the 15-year-old thought his dad was “nuts.”
“I told him I probably was,” Davidson said, “but I didn’t want that to get in the way of what I wanted to do.”
It wasn’t long before Jesse bought into the idea, and the pair were making their way across Ontario, with Jesse displaying an inspiring level of grit that made his father proud.
“People think sitting in a wheelchair is easy work,” Davidson said. “It’s not. It’s very hard. And it was the hottest summer on record at that time, and we were fighting the black flies in northern Ontario, but Jesse never complained, not once during those 124 days on the road.”
With Jesse’s van, OPP escort vehicles, and a team of spirited volunteers behind them, father and son completed the 3339-kilometre trek. By the time they made their last stop in Ottawa, they had raised $1.5 million for research. John was already planning his next step.
“I knew if we were going to raise enough money to support research annually through an endowed fund, I was going to have to do this all again,” Davidson said. “And in an even bigger way.”
Going the distance
Three years later, on Jesse’s 18th birthday, Davidson dipped his running shoes in the Atlantic Ocean in St. John’s Newfoundland. He dipped those same shoes in the Pacific Ocean in Victoria, B.C., 286 days later, raising $2 million, and setting a Guinness World Record for the fastest crossing of Canada on foot.
Davidson’s other honours include the Gold Ribbon Award for outstanding community service from the Canadian Association of Broadcasters, the Order of Ontario and the Meritorious Service Award presented by the Governor General of Canada.
Jesse passed away in 2009 at 29. But his legacy lives on. In 2010, Davidson honoured his son as the final torchbearer at the Vancouver Olympic Games.
Defeat Duchenne Canada
Earlier this year, “Jesse’s Journey” became Defeat Duchenne Canada to broaden the organization’s reach, engage and support more families, and to gain the federal support needed to make even greater progress towards the ultimate goal: to defeat Duchenne muscular dystrophy.
The Defeat Duchenne website features a clinical trial tool that can help families learn more about their child’s eligibility for possible clinical trials.
The organization is now funding research in Canada, United States, England, France, Italy, Belgium, Holland, Australia and Japan, with requests coming in from India and Uruguay.
Although there still is no cure for Duchenne, “There are certainly a lot of promising projects that will take us down the treatment road, and treatment is a great place to start,” Davidson said.
Painting with words
In addressing the future storytellers of the Faculty of Information and Media Studies Class of 2022, Davidson shares his message as a celebrated Canadian and a persuasive communicator.
His advice is simple, as he believes all good communication should be.
“To be excellent communicators, be storytellers. Don’t just repeat facts and numbers.”
“Ask yourself who your audience is and make the story simple for them. People don’t retain facts, they retain stories. Paint pictures they can see with the words that you use.”- John Davidson, LLD’22
Most of all, Davidson hopes he can inspire graduates to “let their passion show. The more passionate you are, the more people will listen, and the more you can make a difference.”