Community rallies around Thomas Adams-Bennett after rare brain cancer diagnosis

A much-loved little boy named Tommy has become the focus of a Western Sydney community, after he was diagnosis with a rare and inoperable brain cancer.

Little Thomas Adams-Bennett’s life changed almost overnight when he was diagnosed with an aggressive form of cancer, but his dedicated community of friends and family are doing whatever they can to bring a smile back to his face.

Earlier this month, the seven-year-old was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare brain cancer that has been resistant to all known treatments.

Towards the end of August, his mums Amanda and Danielle knew something was wrong when his little voice became husky and his words slurred after he complained of headaches and some dizziness.

They were initially told their youngest son had nothing more than an iron deficiency, but Amanda’s gut told her otherwise.

“I told the doctor that I thought he had something neurological going on,” she said. “I felt like he’d had a stroke, or a brain tumour (and I was praying to God I was wrong).”

Tommy Adams-Bennett (middle) with his mums Dani and Amanda Adams-Bennett and brother Lachie. Picture: John Appleyard

But just days later, after brave Thomas — affectionately known as Tommy — had CAT scans, MRIs and a biopsy, he was diagnosed with high-grade DIPG.

“Our hearts sank and I just broke into pieces,” Amanda said.

“Knowing what this cancer does to the kids and how it impacts their quality of life, it was just our worst fear confirmed.”

After spending over a week in hospital, cuddled and kissed by his mums and older brother Lachie, Tommy was able to return to the family’s Werrington Downs home, where the community had been working behind the scenes to bring a smile back to his little face.

Tommy with his older brother Lachie. Picture: John Appleyard

Amanda and Danielle’s close friend Sarah Bale had set up a fundraiser to help ease the burden on the family, and give them experiences and memories in the wake of the painful diagnosis.

“We’ve been best friends for over half our lives (more than 20 years). The one thing they need, I can’t give them,” Ms Bale said.

“The fundraiser was set up to help ease an unthinkable burden that no parents should have the endure.

“So many people love cheeky little Tommy, this is shown in the immense amount of donations so far.”

Last week Tommy met his favourite team — the Penrith Panthers — and his mums hope they can take Tommy on a beach weekend away, which has also been kindly donated, some time soon.

The community has rallied around the Adams-Bennett family in the wake of Tommy’s diagnosis. Picture: John Appleyard

They also want to try to arrange another holiday when Tommy’s treatment has finished, so he can experience his two biggest “passions”: riding jetskis and eating chocolate.

“It sounds like a weird combination – but he hasn’t had a lot to love or things to look forward to recently,” Amanda said.

“It’s devastating when we already see little parts of our gorgeous, previously happy and energetic boy slowly fade away.”

While there is currently no cure and DIPG is inoperable — a situation that has not changed in 50 years — Amanda and Danielle are refusing to give up hope.

In February, an Australian first DIPG clinical trial began at the Kids Cancer Centre at Sydney Children’s Hospital, Randwick, which uses CAR-T cell therapy to try to attack and destroy the fatal tumour.

“There are advancements happening,” Amanda said.

“We need to be strong for our boys, we refuse to give up hope and every small smile and giggle gives us more hope that he could be the one per cent that lives longer than the expected 6 to 12 months.”

Little Tommy began radiation – which he will undergo five days per week for six weeks – earlier this month, and while he is struggling – he’s become a little hero among his peers – and for his big brother.

“I keep reminding myself and Dani that while it’s heartbreaking that our little boy is one of around 20 kids a year diagnosed in Australia with this rare cancer, we know that we are not alone, we have each other and the love and support from our friends, family and entire community,” she said.

To donate to Tommy’s fundraiser visit: https://www.gofundme.com/f/thomas-on-the-fight-of-his-life

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