Dainere’s Rainbow founder, Yvonne Anthoney, was honoured to be invited as a keynote speaker at Shape the Future of Paediatric Palliative Care in the ACT, a significant community round table hosted by Palliative Care ACT, bringing together families, clinicians, health professionals, advocates, and the wider community.

The event created an important and deeply meaningful conversation about the urgent need to strengthen paediatric palliative care services in the ACT and surrounding region.

For Yvonne and the Anthoney family, this issue is profoundly personal.

When their youngest daughter and sister, Dainere, was diagnosed with an aggressive brain tumour in 2009, the family’s world changed forever. At the time, there was no dedicated specialised paediatric palliative care service in the ACT. Yvonne relocated to Sydney for many months to remain by Dainere’s side during treatment, while the family was forced to live across two cities.

During her keynote presentation, Yvonne shared the realities families face when specialised paediatric palliative care close to home is not available.

“To have to leave your home when your child is dying is something no family should ever, ever be asked to do,” Yvonne shared.

“The financial strain was significant, but what stays with me most is the complete restructuring of what it means to be a family under extreme pressure.”

Yvonne also reflected on Dainere’s decision to die at home in Canberra at the age of 15 in 2013, a choice that mattered deeply to both Dainere and their family.

“When Dainere chose to die at home in Canberra, that choice mattered deeply,” Yvonne said.

“Not divided, not stretched across distance, but together.”

The keynote presentation highlighted not only the gaps that existed at the time, but also the importance of coordinated, compassionate, specialised care for children and families living with life limiting illness.

While acknowledging the kindness and dedication shown by healthcare professionals who supported Dainere and the family, Yvonne spoke about the need for specialised paediatric expertise and stronger systems of care from diagnosis onward.

“Kindness alone is not enough without specialised paediatric expertise.”

The event also recognised the powerful role lived experience can play in influencing meaningful change.

Through Dainere’s Rainbow, the Anthoney family has tirelessly advocated for children with brain cancer, while also contributing to important conversations surrounding paediatric palliative care. Their advocacy and collaboration have contributed to progress within the ACT, including the establishment of a specialised paediatric palliative care nurse role and ongoing co design work to help improve resources, support, and care pathways for families.

Yvonne spoke passionately about the importance of ensuring families are never left navigating fragmented systems during the most difficult time in their lives.

“Everything we do is driven by the same purpose. To ensure that no family is left navigating a fragmented system at the most critical time in their lives.”

“Every child deserves care that is compassionate, coordinated, specialised, and close to home.”

Dainere’s Rainbow remains humbled, honoured, and proud to have been part of this important and impactful event and conversation.

We sincerely thank Palliative Care ACT for bringing together families, clinicians, advocates, and the community to help shape the future of paediatric palliative care in the ACT.

As shared by Palliative Care ACT following the event:

“Thank you to everyone who attended today’s community round table. Some big discussions were started in that room and we are so grateful for your contribution to improving our understanding of the demand for more paediatric palliative care in the ACT.”

Dainere’s Rainbow will continue advocating for a future where every child and every family have access to the specialised care, compassion, dignity, and support they deserve.