'Never give up': Family and friends to farewell Warrnambool's Naomi Philpot after battle with brain tumour

From the homeless person she approached on the street to a national TV audience just weeks ago for the Royal Children's Hospital appeal, they were the words Naomi shared with almost everyone she met.

Family and friends will farewell the 12-year-old on Saturday at Dennington's Kardinia Church and celebrate a life that her parents Andrew and Anna say was filled with joy - all because of her faith in Jesus.

And through all that Naomi had to endure, which included 11 brain surgeries and six airlifts to hospital in Melbourne, she loved to pray.

"She'd be having brain surgeries but she would pray for people who had a cold, it didn't matter. She just had a heart for people," Anna said.

"In the end her body gave up but her spirit never did."

Naomi's brain tumour was first discovered when she was just three-and-a-half and that was when she had her first surgery, followed by another three when she was four.

But her condition was not text book and it took months for experts to put a name to it. "It baffled them," Andrew said.

When biopsies were sent to the top reference pathologist in the US, it took time to diagnose her with Metastatic Pilocytic Astrocytoma, and even then they still weren't sure.

Andrew said they were told early on that the three-year survival rate for even children who had their tumour fully removed - which Naomi didn't - was 50 per cent.

"So we knew she was fighting for her life," he said. "After her second operation, every day from there has been a bonus because that's how close she was then."

It was around that time that Naomi first painted a picture for the Royal Children's Hospital Oncology Art Exhibition with with the words "never give up". "I don't even know how it started. It was intrinsic, she just knew," Anna said.

Naomi loved art and would make bookmarks and pictures for all the doctors and nurses who looked after her. "She was a giver. She would pray for all her doctors and nurses," Anna said.

"She would ask the nurses at the hospital 'have I given you a bookmark?' and she would hurry to finish one before their shift finished. She loved colour. She loved sparkles. She loved rainbows. She loved making things and giving them to people," Andrew said.

She also loved to paint, and last year one of her paintings ended up on the cover of the world leading medical journal The Lancet Child and Adolescent Health.

In 2017, Challenge sent the family to Disneyland in America, and while there they passed a middle-aged homeless woman on the street and Naomi approached her and whispered "never give up".

After about an hour when they passed by her again, the woman walked up to them in tears and said: "Your little girl just inspired me because she told me 'never give up'."

Naomi would often use those three words to start a conversation with strangers. "People receive from kids what they never would from an adult... she was able to cut through the nonsense and into people. It was extraordinary," Andrew said.

While at the Royal Children's Hospital earlier this year, Naomi calmed down a distressed child telling them to never give up.

They were the first words she used when appearing on television with host Sam Mac for this year's Good Friday Appeal, saying "I never give up".

The couple have been overwhelmed with the support they received during their journey.

"We have an amazing community. We want to thank everyone. The community has been a village to her. The village has supported us - school, friends, medical staff, neighbours, paramedics," Anna said.

The couple are still touched by the paramedic who phoned in the middle of the night to look after Naomi when Anna had to call an ambulance for her youngest son who had to be taken to hospital.

"I couldn't leave Naomi home," she said and Andrew, a teacher, was away on school camp at the time.

The past two years had been tough on Naomi, especially not being able to see her friends from school during lockdowns, her parents said.

Over the years Naomi endured five protocols of chemotherapy, including a clinical trial, and while it worked it came with lots of side effects which sparked an emergency brain surgery last year and a six-week stint in hospital during another lockdown. "That was hard," Anna said.

While her parents were able to visit, there were times when her siblings were not allowed.

And in April this year when Naomi had another emergency airlift to Melbourne for surgery, it was clear the chemo wasn't working and her parents asked her about undergoing more treatment.

"She thought about it and she said 'God says no more treatment'. She was adamant. She was very comfortable but she had no fear," Anna said.

"From then on I started saying to her: 'Naomi, if God's got a job for you to finish on earth, come back when you see Jesus but if you see Jesus and you like being there, you have the choice to stay or to come back. I was releasing her. We had this conversation with her for weeks because I didn't know when. I just knew I needed to give her that choice because so much freedom and choices were taken away from her most of her life.

"She knew where she was going and she had no fear. Her faith was not religious it was a vital relationship."

Naomi had told her mum that she was looking forward to being with Jesus, and to seeing her five-year-old friend who had passed away weeks before from an inoperable brain tumour.

Naomi had touched so many people in her short life that even the ethics committee meeting at the Royal Children's Hospital to discuss whether stopping chemo was the right thing to do saw more than 50 people turn up. "She had touched so many people over the years," Anna said.

The Wednesday before she passed away, Naomi was able to see Guy Sebastian in concert in Melbourne with her friends.

Support act and The Voice winner Bella Taylor Smith had given Naomi seven tickets when they appeared on TV together for the Royal Children's Hospital Good Friday appeal.

"It was her first real big concert. We took her and she danced with her friends," Anna said.

Taylor Smith came to see Naomi during the concert to give her a T-shirt and CD.

But by early Saturday, May 28, Naomi needed another emergency brain surgery - something she didn't recover from.

Andrew and her brothers were able to drive from Warrnambool to say goodbye, and even the doctors came in on their days off to also say goodbye.

In a touching moment, the nurses who had known Naomi for years formed a guard of honour as they left Cockatoo Ward at the Royal Children's Hospital for the last time.

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