Despite global attention, Evan's Legacy 'struggling' to attract donations
Published Tuesday, July 26, 2016 5:06PM EDT Last Updated Tuesday, July 26, 2016 6:23PM EDT
Seven months after the death of Evan Leversage, reminders of his life are all around his St. George home.
In the kitchen, there are photos of Evan on the refrigerator. In the living room, there are more photos, as well as other mementos of the last few months of his life.
And then there’s the Christmas tree.
It’s been up since long before last December, and Nicole Wellwood – Evan’s mother – has no plans to take it down any time soon.
“Why would someone want to take down something so priceless?” she said in an interview.
“It’s more than a Christmas tree. This is Evan. I would take this over all the money in the world.”
Christmas was Evan’s favourite holiday. One of the seven-year-old’s final wishes was to celebrate one last Christmas.
His story garnered attention across Canada and around the world, with an estimated 7,000 people showing up in St. George last October for a special Christmas parade.
Evan ended up in palliative care just a few weeks later, and died in early December.
In his final weeks, his family launched Evan’s Legacy, a foundation to raise money for research into childhood cancers and brain tumours.
Wellwood says it was something she wanted to do to help other children in the way Evan himself so often seemed to.
“I look at what Evan did in seven years, and it blows my mind. One child can affect so many people,” she said.
All money donated to the foundation is matched by a federal agency and put toward work being done through the Brain Tumour Foundation of Canada.
The research is being spearheaded by Dr. Michael Taylor, a pediatric neurosurgeon who discovered that what was previously thought to be one type of tumour was actually four separate types of cancer.
“He has found some groundbreaking information,” said Susan Marshall, the CEO of the Brain Tumour Foundation of Canada.
Even with all the attention garnered by Evan’s story and the October Christmas parade, the total donated to Evan’s Legacy stands a little above $35,000.
“Unfortunately, it has not taken off the way that I imagined,” Wellwood said.
“We really are struggling with donations coming in.”
Marshall says her organization is “very proud” of the progress it has made toward covering the cost of the project, which she pegs at $1.2 million.
“We’re looking for more and more donations, but of course what we’ve received from Evan’s Legacy is just amazing,” she said.
Wellwood says research into childhood cancers is underfunded in comparison to versions of the disease more likely to occur in adults.
She says her push to eliminate some of that gap partially comes from a desire to prevent other kids from going through the same tribulations as her son.
“It’s never easy, losing a child. It has proved to be the most difficult challenge I’ve ever faced,” she said.
Wellwood is also moving to preserve her son’s legacy in other ways.
She’s working with an author to publish a children’s book based on Evan’s story, entitled The Boy Who Moved Christmas. Part of the proceeds from the book will be put toward Evan’s Legacy.
She’s also planning fundraisers, including another edition of ‘Touch the Truck’ – an annual event in St. Marys which began when Evan was two years old.
With reporting by Marc Venema