Zed Seselja (ACT, Liberal Party) Share this | Link to this | Hansard source

Every year around 2,000 Australian children under the age of sixteen are diagnosed with a brain tumour that is either benign or malignant. No significant improvement has been made in survival rates in almost three decades, no risk factors have been identified and no screening procedures are in place. Brain cancer is one of the most complex yet least studied of all cancers due to lack of funding. It is among the most common type of childhood cancers and yet remains among the most difficult to cure. It is now the No. 1 cancer killer of children under 16.

Treatment of paediatric brain tumours is more complex than that for other childhood cancers. Surgery to remove the tumour is not always possible, because it may be inaccessible or because it would cause too much damage to the surrounding brain tissue.

Even a benign tumour in the brain can be life-threatening, and the prognosis for children diagnosed with brain tumours depends not only on the type, grade and size of the tumour but on its location in the brain. The location of the tumour can also vary the symptoms patients suffer.

My friend Dainere Anthoney was diagnosed with high-risk medulloblastoma in 2009. She endured a 10-hour surgery, high-dose radiation and high-dose chemotherapy with autologous stem cell transplants. Then in February 2012, she suffered an inoperable and incurable recurrence of the disease in her spine, with palliative care being the only treatment available. This lovely young lady later then passed away on the 24 July 2013 at the age of 15.

I was fortunate enough to meet Dainere in 2010. The first thing I noticed was not only her brilliant smile but how much smaller she was than other girls her age.

Dainere Anthoney's doctor suggested that she create a bucket list—a list all the things she wanted to do before she died. This suggestion sounds unspeakably sad and quite harsh when applied to a young girl, but the remarkable Dainere was all about celebrating life. She created her own special list, as she liked to call it, with more than 20 things on it and even managed to tick things off with the selfless help of fellow Canberrans.

To fulfil some of her goals on the list, Dainere was offered a special tour of the National Zoo and Aquarium, where she fed the lions, a cruise on Lake Burley Griffin by Lakeside Ferry Cruises and an invitation to a cat show by Capital Cats Incorporated. An anonymous donor provided hot-air balloon tickets with Balloon Aloft. She also had an asteroid named after her, and although Dainere was not well enough to fulfil her goal of rock climbing, her teddy bear Theodore fulfilled it for her.

In 2013 Dainere and her brother Jarrett together planned their City2Surf event, with Jarrett using his talents to assist Dainere to raise awareness and funds for the disease that would unfortunately take her young life before the event. Jarrett Anthoney originally aimed to raise $3,000 to $5,000 but, to his surprise, he managed to raise over $30,000. This year there is going to be a dedicated team, the Dainere's Rainbow Team entry, for City2Surf on 10 August 2014 in Sydney. Again, this event is aimed at raising much-needed awareness and funds for paediatric brain tumours.

An inaugural memorial dinner for Dainere Anthoney was held on 21 June 2014 at Thoroughbred Park, Canberra Racecourse, which I had the privilege of attending. This event continued to raise awareness of this horrendous disease and also helped raise desperately needed funds for necessary research. This event raised around $20,000, and there are plans of another dinner to celebrate Dainere's life. Information and details can be found at www.daineresrainbow.com.au.

Personally, I was moved by her determination and courage. I helped to launch her first children's book, You have to go through a storm to get a rainbow, and helped promote her second, Theodore and FriendsTheodore is Left Out. With publishing these two books and several other fundraising works, the gifted writer and talented young girl managed to raise over $62,000 for the Sydney Children's Hospital Foundation Brain Tumour Research Fund. Dainere's school, Burgmann Anglican School, was even a fundraiser and contributed by holding events to help support her and her wish. One event that was quite special to Dainere was that the senior school held a 'Theodore day' where everyone could bring their favourite teddy bear or soft toy to school that day for a gold coin donation. She thought it was a brilliant idea and one that could possibly be expanded upon for future fundraising for the Sydney Children's Hospital Foundation Brain Tumour Research Fund.

Dainere's Rainbow Brain Tumour Research Fund was established in conjunction with the Sydney Children's Hospital Foundation to assist the research team lead by Dr David Ziegler, Dainere's oncologist. Research will be undertaken on three research projects as part of Dainere's fund. Dainere's Rainbow Brain Tumour Research Fund maintains a lifetime commitment to helping eradicate this number one cancer cause of death in children. This is a not-for-profit fund and 100 per cent of all funds raised or donated go directly to this vital research. While speaking on this issue, I would also like to take a moment to commend the work of Dr Charlie Teo and his team in their work with the Cure Brain Cancer Foundation. Their mission is to increase five-year survival to a rate of 50 per cent within 10 years. We hope the great research they are doing will lead to a cure.

Dainere Anthoney was one of the most courageous, selfless and inspiring young person you could ever meet. She worked passionately and tirelessly during her short life to raise awareness and funds for paediatric brain tumours. Her greatest wish in life was that no child in the future would have to suffer as she did and that one day a cure for this horrendous disease would be found. She lived her entire short life in Canberra and during this time she made a significant impact not only on the Canberra Community but also across Australia and worldwide. She inspired many, leaving lasting footprints on their hearts and lives. She was a productive and creative awareness and fund raiser for paediatric brain tumours and an inspiration and role model at school and in the sporting arena.

She was subsequently named as Young Canberra Citizen of the Year 2013 jointly with her brother Jarrett in recognition for their leadership, courage and determination to raise awareness in the community of paediatric brain tumours—truly an honour and a legacy which she will always be remembered for. It is important that we raise awareness of paediatric brain tumours and raise money to fund research in memory of the inspirational Dainere. I am hopeful that we will see her greatest wish in life become a reality.

I would like to acknowledge the courage and compassion of Dainere's family—her parents, Stephen and Yvonne, her brother, Jarrett, and her sister, Nalani. Lastly, I would like to end with part of Dainere's speech she wrote before she sadly passed away where she said that her little voice could only make a small difference but together many voices could create change.

I would like to thank Kate Fleming, a year 10 student from Mt Stromlo High School who did work experience in my office, for her assistance in the preparation of this speech.