Terribly sad news this week with inspirational Gungahlin teenager Dainere Anthoney passing away at home on Monday night after an extended battle with cancer.
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"She was sitting in her favourite seat in the lounge chairs and we were all with her. It was difficult. She just took these final little breaths and had a little tear trickled down her eye," her mother Yvonne said.
The softly-spoken 15-year-old was diagnosed with a brain tumour - or high-risk medulloblastoma - in 2009.
Throughout her life she worked to raise money for the Sydney Children's Hospital Foundation Brain Tumour Fund, publishing two children's books with all proceeds going to the fund.
ACT Liberal Senate candidate Zed Seselja launched Dainere's first book and helped promote her second and was moved by her determination and courage.
"She was a lovely girl, an amazing girl,'' he said.
When incurable and inoperable tumours were discovered on her spine in February, her doctor suggested she write a bucket list. She preferred to call it her "special list" and ticked off more than few items, not least thanks to the generosity of Canberrans.
"There were some things she couldn't do because of the pain," her mother Yvonne said, this week. "She went to the zoo and fed the lions. Theodore (her beloved teddy bear) went rock climbing [for her], she had a Hummer ride. She went for a ride on a ferry and had a party to thank everyone in her life. She went to a cat show. She had an astroid named after her."
Mrs Anthoney was devastated by the loss of her courageous daughter.
"I'll remember most her beautiful smile," she said. "She was very special. She was admired by so many people. She really put her footprints on so many people's hearts."
A celebration of Dainere's life will be held at 10.30am on Tuesday at Holy Spirit Catholic Church, Burdekin Avenue, Amaroo. She wanted people to wear a colour of the rainbow. Her family have also asked people to bring a single flower so they build a rainbow in her honour.
"Thank you to all the community throughout her life, who read her blog, those who bought her books, those who supported her special little things she got to do. We are so appreciate that and she felt blessed that so many people cared," Mrs Anthoney said.
And her big brother Jarrett, 18, will be running the City2Surf on August 11 in honour of Dainere. The event is raising money for the Sydney Children's Hospital Foundation.
Brain Tumour Alliance Australia has also paid tribute to Dainere.
Secretary Susan Pitt said many people in Canberra and beyond followed her journey through her blog.
Ms Pitt said brain tumours killed more children (from 0-14) than any disease.
‘‘They are second only to accidental drowning as a cause of death from any cause,’’ she said.
More details at www.btaa.org.au
