Evan Leversage's legacy: Family launches fund to study childhood cancer

Evan Leversage has spent most of the past week dozing, his small fingers curled around his mother's hand, flashing a trademark mischievous smile at his visitors when he wakes up.

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The seven-year-old entered palliative care Nov. 4, not quite two weeks after Santa and St. George, Ont., transformed his hometown so that he could celebrate Christmas two months early.

But Evan woke up and began nodding with his mother as she promised to raise money to study childhood cancers, his aunt told CBC News.  

More research

To do that, the family launched Evan's Legacy on Tuesday in partnership with the Brain Tumour Foundation of Canada, hoping to translate some of the awareness they've raised in the last few months into research dollars.

"Nicole sat beside Evan … and said to him that she was going to work so hard to make sure other children didn't have to feel bad like he did," his aunt Ashley Agar said. "Evan smiled and he shook his head and said 'OK,' which is a lot for him right now."

Evan was diagnosed with an inoperable brain tumour when he was two. He's undergone rounds of radiation and chemotherapy, but this fall doctors told Evan and his mother, Nicole Wellwood, that the tumour had both grown and spread.

"When they told him there were no more treatment options, he asked why," Agar said. "There was another little girl in the hospital and she was getting treatment and he said 'Why her and not me?' and … nobody could answer him.

"Nicole's hopeful that [Evan Legacy] will give other kids a fighting chance, because Evan didn't have that."

The Evan's Journey with Childhood Cancer Facebook page says that the fund's mission will be to increase the amount of money allocated for childhood cancer research. 

In Evan's case, childhood glioma — a type of malignant tumour that starts in the brain or spine — is especially rare.

However, the little boy's story – and his bucket list – has brought significant attention to the illness during his lifetime, his aunt says. The family has organized fundraisers and other events promoting childhood cancer awareness since Evan was diagnosed.

"The brain tumour has given him an opportunity to do some things in life that other kids can't," his aunt said.  "He did a VIP tour with the Snowbirds and the Golden Helmets [Ontario Provincial Police motorcycle team] have really treated him like royalty for years."

Bucket list

So when it came time to create a bucket list, all Evan wanted was to spend time with his family, his best friend and celebrate Christmas.

He and his buddy have since gone to the movies together, he went to Chuck E. Cheese with his brothers, and he celebrated the holidays with the more than 7,000 people who doubled the population of St. George overnight.

The family's experience with cancer has continually been marked by this sort of incredible support – and by Evan's incredible strength.

 "One minute, you're feeling like the world is an amazing place because you're getting gifts and well-wishes and support from people around the world … and you can take a lot of joy in that," Agar said. "But then you walk in the room and you see Evan struggling to stand and it's like you come crashing down just as quickly as you were feeling up."

Christmas magic comes early for dying boy

9 years ago

Duration 5:00

'It was inspirational. Many times I've told people that Evan is my inspiration. Well, the whole wide world just became my inspiration, too,' says mom Nicole Wellwood

But Evan's mother always tries to see a reason for things and to look at the positive in life. It's why she's helped organize events like Horsin' Around for Childhood Cancer, a race run in Evan's honour just a few weeks ago.

"She always looks for happiness and positivity so, in turn, that's what the rest of us do as well," Agar said. "And Evan is pure love, through and through. But I think there's so much more to Evan than he lets on. … He's so quiet, but he's so mischievous."

Evan is spending the time he has left with his family. Unfortunately, the family dog, Periwinkle, was hit by a car and killed last week.

Evan's mother didn't want to tell him at first, but they also didn't want to keep it from him, Agar said.

"When they told him, he said that it was sad – but that he was happy that she was there in heaven."