Benjamin Julian Wills was born on 18 January 2005. Despite being a month early, he was a beautiful, healthy little boy and reached all his milestones on time. When he was about 18 months old, he developed a slight squint and as time went on, he began to have some issues with his balance.
During 2008, Benny became seriously unwell, falling over, vomiting most mornings and slurring his speech. After many visits to the GP at which my concerns were brushed aside, we were finally given a referral to Benny’s paediatrician.
On Friday 5 September 2008, Benny had an MRI at Canberra Hospital which showed a 5cm tumour on his brainstem. We were sent to Sydney Children’s Hospital to meet with specialists who confirmed that Benny had a Diffuse Intrinsic Pontine Glioma, an inoperable brainstem tumour. Benny was given a prognosis with treatment, of twelve months. Benny underwent 25 sessions of radiotherapy, currently the only treatment available for DIPG, each under a general anaesthetic. The radiotherapy temporarily shrinks the tumour and buys a little precious time. By the time we went home in late November 2008, Benny was almost back to normal.
We were lucky. Benny had six months of being mostly ok. He got to live his dreams of going to preschool, playing soccer and seeing real snow. Six months after finishing treatment, Benny began to seriously deteriorate. He lost his ability to walk, talk and swallow. His tumour affected his heartbeat, body temperature, vision and breathing. Despite this, he never complained, just kept going with
a smile on his face. Benny fought DIPG with everything he had for 53 weeks, losing his battle on Friday 11 September 2009. He was four years old.
In 2010, twelve months after losing their son Benny to DIPG, David and Imogen Wills held their inaugural fundraising event, hoping to change the future for other children diagnosed with this devastating disease. The proceeds were donated to the Sydney Children’s Hospital Brain Tumour Fund and became the seed funding for the Benny Wills Brain Tumour Research Program. To date the Gala Dinner has raised in excess of $500,000 but we need to keep going and personalised jewellery by Belle Fever helps us do just that by giving our guests a chance to create their own memories.
