I had the pleasure of meeting Evan Leversage in 2012 for a story published by The Harness Edge.
Evan had a smile on his face the whole time I sat and talked with his mom Nicole at a coffee shop in London. He radiated warmth, happiness and a kind of charisma you don’t normally see in children. The little guy had a spirit that was absolutely irrepressible. He truly was somebody you just couldn’t forget.
I’ve kept in touch with Nicole since then and have followed Evan’s story closely. I sent him some books in September after I heard there were no more treatment options for him. His mom said he liked her to read to him.
When I heard Evan had passed away December 6, I was profoundly sad. Many others are as well, as illustrated by the outpouring of support for his family after the news he had died. Indeed, Evan has been receiving support from around the world, ever since his town of St. George gave him Christmas in October.
But the real gift came from Evan himself because as the town came together to give him one last Christmas, the world looked in on the small community and saw something wondrous unfolding. Some love, faith and magic shone bright from St. George and touched so many around the globe.
In a recent video posted by Nicole on Facebook, Evan seems to have understood his fate.
He hit the record button on the iPad while Nicole was driving. He asks, “You want to see my videos? Go on my iPad. Then he says, “Good-bye guys. Good-bye.”
Good-bye Evan and thank you. Hope to see you again some day.
Here’s my story, published in December, 2012:
Racing Restores Faith
By Kathy Rumleski
Four-year-old Evan Wellwood Leversage is fearless. He touches the colourful shirt of a monster of a man he meets in a coffee shop and then takes the man’s keys. The big guy turns around and finds a kid with a smile to melt a snowman. He tickles Evan and the pair laugh.
Next in the coffee shop, where he’s gathered with his mom, Nicole Wellwood, brother Tyson, 2, and a family friend, he taps a laptop computer that an intense typist is busily working on. The man looks up, smiles at Evan and they’re fast friends.
But his real fearlessness comes from the way he stares down cancer, faces the treatments, endless trips to the hospital, his vision loss and speech impairment with remarkable resilience.
Evan has a malignant tumour deep in his brain stem. It is inoperable. The best he gets is time.
“His life could be turned in the blink of a heartbeat, upside down,” said his mother, whose voice breaks many times during an interview. But she shows amazing strength as well.
She’s from a well known harness racing family with a love for horses in her blood. Her father was Harold (Buddy) Wellwood, who passed away suddenly 12 years ago. He was best known for the standout pacing mare Odies Fame who won horse of the year honours and set a plethora of records during her career.
Nicole’s grandfather, also named Harold, was inducted into the Canadian Horse Racing Hall of Fame in 2001.
She appreciates that her three sons (her oldest is Logan, who is six) also have a love of horses.
One of Evan’s greatest delights is spending time with his grandmother Linda Wellwood and her Standardbreds.
“He’s taken a great liking to going to the barn,” Nicole said. “It seems fitting. It’s very neat to have my children around that and be able to have them go to the barn again. That is part of my history and part of our heritage.”
As this kinship with equines runs in the family, alas, so does cancer.
Buddy’s sister Frances died of leukemia at 14. Buddy himself fought cancer when Nicole was a child. “He underwent chemo and many hospital stays when I was very young,” she recalled.
And now Evan.
The most recent tests at the London Health Sciences Centre reveal Evan’s tumour has stabilized. But the cancer has affected different areas of his body and also his speech.
Wellwood said there may be a device that can help Evan communicate. The right side of his body doesn’t function as well as his left and he also has lost some of his vision. Wellwood is bracing herself for Evan’s total loss of sight as that will happen if the tumour grows even a hair of an inch.
Evan’s last chemotherapy treatment was in February. She decided that was enough on his little body.
“Chemo takes its toll on a young child. There’s no safe drug out there for children. I want him to have the best quality of life.”
And right now he does have that quality. “Everyone who meets him is inspired by his happiness and love of life,” she said.
Evan, who refers to his tumour as a bump in his head, knows that he is different from other children. He also associates the golden ribbon that symbolizes childhood cancer awareness as something special. At the coffee shop, he pulls a gold ribbon off the Christmas tree and becomes upset when he can’t take it home.
“He’ll see it and he lights up,” said Wellwood. “I know he’s got the concept. It’s very heartwarming.”
Wellwood is heavily involved in raising awareness of childhood cancer. It’s her mission to make as many people as possible understand what the gold ribbon campaign is all about and also the bravery of the children with cancer.
Earlier this month she got a tattoo with Evan’s name and a gold ribbon on her right wrist. It was done at Endless Boundaries Tattoo in Ingersoll as part of a Childcan awareness event.
She said getting the tattoo was “uncomfortable” but she thought about Evan, who had to be poked every day for 72 weeks.
Wellwood has also put her support behind a young cancer survivor from London, named Stephanie Simmons, who is petitioning Canada Post to create a commemorative stamp with a gold ribbon to honour the many children with cancer.
Stephanie’s campaign progress can be seen at http://www.goldribboncampaign.com.
Wellwood is also organizing events that benefit Childcan, a charity that supports families dealing with cancer. In September, she organized Clinton Raceway’s Horsin’ Around for Childhood Cancer, which raised $15,500 for Childcan.
Evan got to meet the drivers, who donated their fees to the cause and some of them, such as Jody Jamieson and Doug McNair, have stayed in touch with the family and keep updated on Evan’s status.
Jamieson donated gold gloves to all the drivers who participated in the challenge and following the event, the gloves were autographed and given to the children facing cancer.
Also at the track that day were members of the Hands on Horses Program, an initiative of the Standardbred Revenue Allocation Marketing Committee. Members took the children and their siblings for laps around the track with the horses and the kids loved it, Wellwood said.
“Clinton did more then raise money and awareness, they helped dreams come true,” she said.
She will continue to organize fundraising events for Childcan, she promised, including the annual Horsin’ Around event. The last one in Clinton brought back great memories for Wellwood. She spent a lot of time there when she was younger and loves its family-friendly atmosphere.
She travelled with her father to many tracks around the province and is grateful she had this time with him before he died. She is also thankful for Odies Fame.
“That horse brought happiness. I’ll never forget. She gave me, probably, the best two years,” Wellwood said. “Odie made horse racing feel like a family, the amount of support we received and to be part of something so big.”
Wellwood loves to watch the tape of Odie, who died this past spring, winning the Breeders Crown in October 1999. It was the richest night of harness racing in Canada at the time with more than $5.3 million in purse money.
She was at Mohawk Raceway for that special race. She remembers track announcer Frank Salive’s voice and the crowd urging Odie on. “When I watch the Breeder’s Crown video from that night, if you listen to the cheering, that cheering was all for her. I can hear people (yelling), ‘Come on Odie.’ That night will never, ever fade from my mind,” she said.
Salive recalls the exciting race as well. “The call of that Crown was something like, ‘Odies Fame will spread her fame around the world,’” he said.
“It was a real thrill whenever the home team won the Breeders Crown and the emotion of Odies Fame was right up there with Lifetime Dream in 1993.”
Wellwood said this fall’s event didn’t have the same feeling. “I went to the Breeders Crown this year. There were phenomenal horses, but I haven’t seen the cheering, the heart and the emotion as I did (with Odie).”
Odies’ win that night brought tears to Buddy Wellwood’s eyes, seen as he entered the winner’s circle.
Buddy died the following June. He had just returned home from a race with Odies Fame at Woodbine when he hit the floor. His daughter, who was 16 at the time, said alcoholism contributed to his death.
“Addictions played a big role,” she said. “He had decided he wanted to get sober. But he wasn’t willing to walk away from his business and get the help.”
It is believed Buddy had a seizure the night he died and then aspirated. “It was a tragic loss,” she said.
The next day she raced one of their horses at Flamboro and said that is what her father would have wanted. The track held a minute of silence for Buddy.
Wellwood thinks about her dad every day. “Where I live right now, there are a lot of memories of my father. We’re only about 15 minutes away from Flamboro Downs where Dad finished his racing career. I know Dad is somewhere, part of this equation.”
In September, she moved to St. George in Brant County to be closer to her mother and also farther away from an abusive partner. With such difficulties behind her, she is now focusing on her kids.
“I’ve got three little boys, and they light up my world. Evan’s always been my huge inspiration because if he can do it, and he does it with a smile, there’s no reason I can’t fight to be the best person I can.”
While being a single parent is hard, she knows it was the best move for her family. “I have started re-connecting with people in the (racing) business that I had lost touch with over the last 10 years. Now she’s reaching out again.
She is also focusing on her relationship with her mother, who has been a ‘phenomenal’ grandmother to her three boys. “I’m thankful. She’s seen the worst in me and she’s still here. I have been a very resentful person here and there in my life with what’s all happened. I’m still very thankful that she’s with me. I have to honour her for that.”
She’s also thankful for the harness racing community which has reached out to her during her dark times. “They’re all part of something that has been a family to me.”
She is extremely distressed about what’s happening to the horse racing industry as the provincial government ends a 15 year partnership with it.
She’s hoping an agreement can be reached that will stabilize the industry and let it remain one of the top racing jurisdictions in North America.
“That agreement was very much working,” she said of the slots at racetrack program.
“We all need to stay together on this one. We all need to speak up. It affects not even just the people within the business.”
She feels she owes it the industry to help in this battle to save the beleaguered harness racing community.
She understands its fight for survival only too well from her personal experiences. Yet even with such an uncertain and scary future, the individuals who make a living racing continue to give to others from their own pockets, she said.
“When it comes to Evan, these local tracks are stepping up. It’s not just childhood cancer that they’re giving to, they give back to (other) charities. They give back to their communities above and beyond. It’s a huge asset. Even when their business was in jeopardy, they didn’t stop. It is one big family and we all need to fight. You can’t give up your fight.”
As Christmas approaches, Wellwood is feeling particularly hopeful this year. Childcan has found a sponsor who will be providing some gifts for the three children this season, especially as Wellwood is a single mother. She is thrilled that they’re helping make this festive time even more special.
“I cannot wait. At Christmastime you like to give your children the best. For Evan, I like to go one step further because I don’t know what’s coming. So I try to make it special and memorable every single year. This is the first year he’s really grasped the concept.”
She’s also hoping to fulfill Evan’s wish through the Sunshine Foundation to see Dora and the characters from the Despicable Me movie at Universal Studios in Orlando. And she has plans to volunteer to help other people this Christmas so the boys understand the importance of giving, not just receiving. “I want my children to grow up knowing to help everyone in need.”
Wellwood looks to the future with confidence, but also reality. “This Christmas I have a lot of faith. I’ve had a lot of good things happen to me over the last year. Things could be a lot worse.”