Dainere's legacy: more funding and support for brain tumour research - and a street name

Gungahlin teenager Dainere Anthony passed away in June, 2013, after an extended battle with cancer but her legacy lives on.

Dainere's Rainbow Brain Tumour Research Fund was established with The Sydney Children's Hospital Foundation "to support the research of the devoted Dr David Ziegler and his team who are working towards improving the outcomes for all children diagnosed with brain tumours".


Dainere AnthonyDainere Anthony touched many hearts in Canberra. Photo: Supplied


Just 15 when she died, Dainere was diagnosed with a brain tumour - or high-risk medulloblastoma - in 2009. Then in 2012, the cancer spread to her spine, was inoperable and palliative care was the only option for the softly-spoken young girl.


She touched many hearts through her blog, about her courageous battle, eventually published as the book, You Have To Go Through A Storm To Get To A Rainbow. In a fitting tribute to her selflessness, there is now a Dainere Street in Canberra, in the suburb of Denman Prospect. A gala fundraising dinner is also being held on June 17 at the Ainslie Football Club. All funds raised will go to research at Sydney Children's Hospital Kids Cancer Centre.


The dinner is already sold out but you can pencil the dinner next year, which will be on June 16, 2018, at The Abbey Function Centre in Nicholls. This month's will be the third dinner in memory of Dainere who this year would have been turning 18. Her family said in a statement: " Dainere had a wish and that was that no children would have to suffer as she did, that there would be improved outcomes, less devastating treatments and one day a cure found for the insidious, cruel and horrendous disease; paediatric brain tumours.


"We are continually finding that people within the community are not aware that paediatric brain cancer is the number one disease killer of children in Australia aged between 0-19. "This is why it is crucial to continue Dainere's incredible legacy of selflessly and passionately elevating awareness of this disease and also raising desperately needed funds for research as this is the key to improving outcomes and giving children hope for a future."


Article courtesy of The Canberra Times http://www.canberratimes.com.au/act-news/daineres-legacy


ACT Government to fund children's palliative care nurse

A dedicated paediatric palliative care nurse will soon begin working with children and their families in Canberra.

The ACT Government has announced $2.1 million in funding over the next four years to expand palliative care services.

Assistant Health Minister Meegan Fitzharris said the position was an important addition.

"This position will be dedicated to understanding the special needs of children and their families, particularly working with the families who often may have other siblings that need to be considered in the palliative care stages," she said.

"While children needing treatment for cancer usually go to Sydney, when they return to Canberra having someone there to help support them navigate local services can be vital."

The nurse will maintain a close link with the Sydney Children's Hospital network.

"I would like to acknowledge the Wills and Anthoney families in memory of their children, Benny Wills and Dainere Anthoney, who spoke with me about the need for this service," Ms Fitzharris said.

"In their experiences they had identified a gap in the health services in the palliative care space."

New funding will also support palliative care education for health professionals to strengthen their skills in end-of-life care and support patients to actively make end-of-life decisions.

Palliative Care ACT General Manager Gayle Sweaney said the package would make an enormous difference to young families.

"It's a real gap in services for the ACT, and having a dedicated nurse is going to be really beneficial," she said.

"That distance, the stress, the expense is something they don't need while they're going through what they're going through."

Ms Sweaney said the broader funding for education was also critical to the sector.

"It's a bit like the leaky hole in the roof. We only think about it when the rain comes," she said.

"Educating people is about empowering people and getting them to understand that process better."

This announcement 'touches our hearts', family says


Yvonne Anthoney's daughter Dainere died in 2013 after a battle with brain cancer aged 15.

She said a paediatric nurse would be a major support for families at a difficult time.

"[It's] really important because there wasn't a dedicated palliative care nurse for children and adolescents when Dainere was going through her journey," she said.

"Children who are living with a life-limiting disease have a totally different area of need to what adults do.

"To have that particular nurse that can work with the children, to work through their pain, through their symptoms, through their psychological feelings and to work with their families as well is something that is huge and very relevant.

"It touches our hearts very much."

Dainere's brother Jarrett said extra support was welcome.

"I think that a palliative care specialist in Canberra would make so much of difference both for the patient and the support for all the family members as well," he said.

The Anthoney family is holding a 'Happily Ever After' gala dinner later this month to raise money for Dainere's Rainbow Brain Tumour Research fund.

"Dainere actually said that she wanted all children to live happily ever after and have a future, so, just like the Disney princesses do," Ms Anthoney said.

'More respite care needed for families'

The Wills family lobbied strongly for the paediatric position, having lost their 4-year-old Benny to a brain tumour in 2011.

Benny's mother Imogen said their experience was a trying one.

"We were very lucky with the palliative care nurses that we had but we were relying on collaboration between the adult carers here and the paediatric team in Sydney," she said.

Ms Wills said respite care would be a key part of helping parents with a terminally ill child.

"If you need a break, which we all do from time to time, there's actually somewhere safe that you can put your child," she said.

"[You can] have a break and know that your child's got a dedicated carer that know how to take care of your child's needs."

Article courtesy of ABC News http://www.abc.net.au/news/2016-06-05/palliative-care-nurse-canberra/7477844


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