Canberra teenager Dainere Anthoney passed away in 2013 as the result of cancer but her legacy continues to inspire and change lives.
Dainere's Rainbow Brain Tumour Research Fund was established in her memory, in collaboration with the Sydney Children's Hospital Foundation.
Dainere's Rainbow has so far raised more than $440,000 to support the research of associate professor David Ziegler, who is working towards improving the outcomes for all children diagnosed with brain tumours.
Dainere's parents Yvonne and Stephen run the research fund from their Gungahlin loungeroom, achieving great things in honour of their daughter, who was diagnosed with a brain tumour and then inoperable tumours on her spine.
Mrs Anthoney said on Friday one of the greatest steps forward was the move towards individualised treatment of children with brain tumours, something the foundation had helped to achieve.
She said next year, professor Ziegler would start clinical trials to help children with brain cancer who had not responded to standard treatment. Dainere's Rainbow had provided the seed funding for those trials.
They had also helped to successfully lobby for a paediatric palliative care nurse for the ACT and were working with Sydney Children's Hospital to explain medical procedures in child-friendly language.
Mrs Anthoney, who visits her daughter's grave at Gungahlin cemetery every day, said her daughter helped the family to continue to push for change.
"She's a light, a bright light in the world and that light continues to shine," she said of Dainere.
"Things are starting to change because of Dainere."
Throughout her life, Dainere 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.
The books focused on her beloved teddy bear Theodore, who had been by her side since she was four, and who was the foil for explaining what it felt like to be different.
Dainere's brother Jarrett has now followed in his sister's footsteps.
The 24-year-old educator on Friday launched his own book, Anthony Christmas Bear.
Theodore was a Myer Christmas bear and Dainere collected one each year. Last year, Myer named its Christmas bear 'Anthony' in honour of Dainere and the Anthoney family.
Taking that cue, Jarrett spent 12 months writing Anthony Christmas Bear, with all proceeds going to the research fund.
The story is about perseverance as Anthony tries different jobs in Santa's workshop until he finds his special place. The story was brought to life with illustrations by John Mikita.
"Jarrett is is very proud as he continues Dainere's legacy and works to bring hope and create change for others," Mrs Anthoney said.
"He is hoping to continue writing and honour Dainere through her dream of writing more books that teach valuable lessons."
Long-time supporter of the family, ACT Liberal senator Zed Seselja, launched the book on Friday.
"He was there way back in 2010 when Dainere launched the first book. He was the only politician who came along. The others were invited, but he came," Mrs Anthoney said.
Senator Seselja said "Dainere made the world a better place".
"She showed compassion, bravery, positivity, love and determination," he said.
"Dainere was a bright young girl, who turned her suffering into an inspiration for others."
Senator Sesleja said Dainere's Rainbow and her family were also inspiring.
"Each year hundreds of children are diagnosed with brain cancer and sadly survival rates have not significantly increased in decades," he said.
"I encourage Canberrans to support Dainere's Rainbow and purchase an Anthony Christmas Bear book to support research for this devastating illness."
Mrs Anthoney is also a support for other parents whose children are diagnosed with brain tumours. It's not unusual for her to take a call from a parent in the early hours of the morning who is feeling isolated and needs to talk.
"We do it because it's the right thing to do," she said. "We don't want another family to go through what we have gone through."
- Anthony the Christmas Bear will be available at daineresrainbow.com.au.
- Don't forget to check out Dainere's Rainbow's magical Christmas light display at 17 Delma View, Gungahlin, up to Christmas Eve.