WATCHING her four-year-old son Benny lose his fight against a rare brain cancer in 2009 was “akin to torture” for mum Imogen Wills.

“It’s quite difficult to adequately explain what’s it’s like to watch your child die of brain cancer…just how hideous it really is,” says Imogen.

“You’re watching them lose their function bit by bit, day by day. But they’re still fine in their thinking capacity, so they’re 100 per cent aware of what’s going on. It’s horrifying.”

Almost four years after her son’s death, Imogen has never stopped trying to make sure no parent or child has to go through what she and her family did.

Since 2010 she and her husband David have run an annual gala dinner, held around the anniversary of Benny’s death on September 11, to raise money for research towards Diffuse Intrinsic Pontine Gliomas (DIPG), the aggressive brain tumour Benny was diagnosed with in 2008.

The couple, who live in Ngunnawal with their two sons Tommy, 5, and Sam, 1, were approached by Dr David Ziegler from the Sydney Children’s Hospital after their first fundraiser, which raised almost $40,000.

“He asked us how we would feel if we used the money we raised to start an Australian first research program, focusing on finding better treatments and a cure for DIPG,” says Imogen.

“Now every cent raised goes towards that, and they’ve kindly named it the Benny Wills Brain Tumour Research Program. We’ve raised about $200,000 so far.”

Over the past two years the research program, run through Sydney Children’s Hospital in Randwick, has made several exciting breakthroughs; screening more than 3500 drugs and identifying several compounds that appear to be extremely active against the tumour cells.

“It sounds quite morbid, but as there is such a low survival rate for brain cancer, in particular DIPG, people can tend to shy away from researching it,” says Imogen.

“We’re really pushing to change that with these breakthroughs…it’s now the number one cause of death in children and young people in Australia.”

Imogen says focusing on “the facts and figures” has been her way of dealing with the loss of her son.

“Grief is an interesting one… it can get harder as you go on,” she says.

“Sometimes, there are days where I crawl under the doona and cry. I realise that if he were alive, Benny would be almost nine now. I can’t even picture what he would look like in my head. I can’t remember what it felt like to hold him, to touch him. For a mother, that’s incredibly, incredibly difficult.

“We still have our traditions, we like to bake a cake for Benny’s birthday in January each year and we send balloons up to heaven.”

Imogen says the couple hope to continue fundraising until a cure is found.

“This is not just a way to raise money for an important cause, but it also keeps Benny very much a part of our lives,” she says.

The Benny Wills Gala Dinner will be held at the Canberra Southern Cross Club, Woden, 7pm, on Saturday, September 14. Tickets from bennywills.org/