Nick Xenophon (SA, Independent) Share this | Link to this | Hansard source

Tonight I rise to pay tribute to the extraordinary and inspiring life of Erin Griffin, from my home state of South Australia. On 5 December last year I spoke in the Senate about Erin's monumental struggle with brain cancer. In February 2012, when Erin was just 11 years old, she was diagnosed with a rare form of brain cancer, DIPG, otherwise known as diffuse intrinsic pontine glioma. Fewer than 10 per cent of DIPG children will live longer than 18 months from diagnosis. Survival is even rarer.

Upon diagnosis, Erin was told she had only a few months to live. Not wanting to give up without a fight, Erin, with the overwhelming support and the ferocious love of her mum, Amanda, agreed to participate in a Phase 1 clinical trial at Westmead Children's Hospital, in Sydney. This was no easy feat, as it involved Erin and Amanda travelling from Adelaide to Sydney every month to receive therapy. For Erin, this travel was itself gruelling.

Due to Erin's inner strength and never-give-up attitude, she was instrumental in creating awareness of paediatric brain cancer in Australia, and to a global audience. Erin travelled twice to the United States to give speeches raising awareness of childhood brain cancer, one of which was for CureFest, in Washington DC last year, where Erin literally spoke to thousands. It was these achievements that really displayed how passionate and articulate Erin was in her advocacy for a cure and for awareness of childhood brain cancer. Erin, who remarkably was a shy child herself, found the courage somewhere deep inside to fight—not just for herself but for those without a voice.

When I had the privilege of meeting Erin last year, I was struck by her wisdom and dignity, way beyond her years. Put simply by Erin: 'I'm going to carry on raising childhood cancer awareness, and I'm going to do this in honour of the kids who lost their lives to cancer.' Things were seemingly positive in her fight, however, during a trip to visit family in Scotland in July of this year, Erin took a turn for the worse, suffering from serious brain swelling. On her return from overseas Erin spiralled further and further away from us.

On the 6 August this year, Erin made the brave decision to appear on the Channel 7 Sunrise program. For any 14 year old this would be a nerve-wracking and exciting proposition, and for Erin this was especially the case. Erin was nearing the end of her fight against childhood cancer. She was in a lot of pain and on high doses of steroids, and her face was bloated as a result. Despite wanting to look her best for a national television program, Erin made the decision to go on the show despite how she felt and looked at the time, because for her the message was more important than anything else. Erin declared on national television that morning:

I want international childhood cancer awareness and funding so children don't have to die.

World renowned neurosurgeon Dr Charlie Teo—a man who I have enormous respect for—also appeared on the program with Erin. He said:

I am so frustrated at how progress is being made—it's just going too slowly—we need to change the game. We need to communicate, collaborate, and accelerate.

It is little wonder that Dr Teo is so frustrated. Unlike other forms of cancer, which have seen quite dramatic increases in survival rates, the survival rate of brain cancer over the last 30 years has barely seen a two per cent increase; it is now around 20 per cent. In other words, Dr Teo will only see two out of 10 patients survive brain cancer for five years. Dr Teo goes on to make a comparison with those diagnosed with leukaemia, having seen a shift from 90 per cent succumbing to the disease when he was in medical school to a 90 per cent five-year survival rate now. When asked why this is, his response is simple. 'It's purely about money and awareness,' said Dr Teo.

On 1 September this year, Erin lost her battle with brain cancer, aged 14 years old, and 3½ years after she first began her incredibly courageous fight against this rare brain tumour. In Erin's own words earlier this year:

It makes me sick that if someone did something about this 10 years ago, maybe all the kids would be alive today.

It isn't fair that children are dying because there isn't enough awareness or funding. It's not fair that parents are losing their children. It's not fair that kids are losing their brothers and sisters. I don't understand how childhood cancer research gets so little funding, when children are our future.

In one of Erin's last video posts on YouTube, she set out her international mission. She said:

I want to raise international childhood cancer awareness because children need better treatments or even a cure, because they have their whole lives ahead of them and it's not fair. I want to make a difference—can you help me?

I visited Erin's mother, Amanda, only last week in the family home in the south of Adelaide where Erin lived her final years. Throughout the house, photos of Erin adorn the walls, and Erin's bedroom has become a shrine for the beautiful, courageous and tenacious teenager, who was blessed with a loving family. Amanda shared with me that Erin died at 12.50 am, in the early hours of Monday, 1 September. The significance of this time is that it was about 50 minutes into Childhood Cancer Awareness Month. Erin's mum, Amanda, said it felt as though Erin wanted to make it into this month and show her support. Even on the day before she died, Erin told her mother: 'No kid should have to suffer like this, mum. I just want to be normal.'

Even after Erin's tragic passing, her ability to galvanise a support base is still as strong as ever. Erin's online petition on change.org, Erin Griffin Raising Childhood Cancer Awareness, has had hundreds of supporters since her passing and is now at the 10,677 mark.

I now seek leave to table this document.

Leave granted.

I refer to this document, and I call on the government to acknowledge the need to make paediatric cancer research a national priority and develop a national plan for the advancement of childhood cancer research. I would also like to take this opportunity to pay tribute to The Kids' Cancer Project, who have been instrumental in their support of Erin and her family. In particular, I would like to mention Peter Neilson, Director of Strategy and Partnerships. Peter has been a tremendous emotional support to the family and an invaluable research resource to my office. Thank you, Peter.

I broached with Peter and The Kids' Cancer Project how we could best honour Erin's achievements and memory, and I have the honour of making an announcement tonight on their behalf. The Kids' Cancer Project have named a $100,000 grant in honour of Erin: the Erin Griffin Childhood Cancer Research Grant. The Kids' Cancer Project and Erin's mum, Amanda, have agreed that the recipients of the grant will be Dr Geoff McCowage and the gene therapy team at Westmead Children's Hospital, which is where Erin took part in her clinical trial.

I acknowledge Dr McCowage and his team for their work in extending the life and quality of life for children with terminal brain cancer, through the use of new gene therapies. It is my hope that these grants and funds continue to flow so that they continue this groundbreaking research. I also pay tribute to Ren Pedersen, the founder of The Cure Starts Now. It was his charity that initiated DIPG research in Australia. Ren's promise to his nine-year-old dying daughter was to help find a cure for DIPG. Thank you, Ren, for your work.

Erin was one of 30 Australian children aged between one and 14 years of age who died from brain cancer this year. This equates to a whole classroom every year, yet less than one per cent of the NHMRC budget is used for kids' cancer research. Erin said it best herself:

It could happen to your daughter, to your son, it could happen to anyone. Our children deserve more. Help make childhood cancer a national priority. Force our Government to assume responsibility and appropriately fund childhood cancer.

Erin, may you rest in peace. My pledge is to ensure that your all-too-brief and beautiful life inspires governments around the nation to honour your memory with the support and funding that childhood cancer so urgently deserves.