Determined mum fights for wellbeing of kids with tumours

Children's Tumour Foundation
Strong. Compassionate. Selfless

When Alice Dell’s son Barney was two years old, she and her family received the devastating news that he has neurofibromatosis (NF), a genetic condition that causes tumours to grow on a person’s nerves.

She was strong and determined to not let NF define Barney, who has brain tumours and is now in primary school.

Ever since the diagnosis, Alice has fought for Barney’s wellbeing and the wellbeing of others. She has raised hundreds of thousands of dollars and is always ready to share her story with other parents to help them navigate the uncertainty of a diagnosis.

The primary school teacher channels her support through the Children’s Tumour Foundation and has worked hard to further its goals of improving awareness, celebrating difference, supporting families and funding research.

“NF is an incredibly variable condition with no way to tell how it will affect each individual,” she says. “Barney has spent endless hours in hospital. He has had twenty-four MRIs under general anaesthetic and brain surgery.”

Alice is often the public voice of families with NF in matters concerning their needs. She engages with the media and plays integral role in reducing social isolation and advocating for positive social attitudes.

Her family are also passionate about NF, and her parents have established the Barney Fellowship, which provides funding to the Murdoch Research Institute at the Royal Children’s Hospital.

Despite the seriousness of the condition, Alice has not lost her sense of humour. She is the leader of the Barney Army, a team of over sixty friends and family who have run in their undies at Cupid's Undie Run every Valentine's day to raise funds.

“We have raised over $300,000 but, more importantly, have educated hundreds of people about NF,” she says.

Westfield Local Heroes are nominated and voted for by their communities, with the three top finalists per Westfield centre each awarded a $10,000 grant for their affiliated organisation.

The foundation will use its grant to engage a paediatrician for fortnightly clinics at the Royal Children’s Hospital.

The aim is to prove there is enough demand from patients to sustain a service through Medicare billing.

__For further information on the Westfield Local Heroes program, click here. __