Thursday, 18 June 2026
Manly Event Space, Manly
Her Excellency the Honourable Margaret Beazley AC KC

Thank you, Renee,^[1]

I acknowledge the Gayamaygal, Traditional Custodians of these lands and waterways, and pay my respects to their Elders past, present, and future

In thinking about AYAH – about how it came to be… about who it is designed to support… about the services it provides and the impacts it makes – it is difficult – I would say impossible – to avoid the word extraordinary…

Extraordinary people, families, and community;

Extraordinary compassion, expertise, and generosity;

Extraordinary vision, determination, and collaboration.

It is a story that began at Bear Cottage here in Manly about a decade ago… and the staff^[2] and families of the young patients there…

At the time, palliative and respite care tailored specifically to the needs of younger adults with life-limiting illnesses was lacking. There were services for children – like Bear Cottage^[3] – and for older people, but none for the young people, whose illnesses, as their parents and the health professionals well know, are often more complex and more challenging than those of the little ones and even those who fell into the older age category.^[4]

What was needed was a ‘Big Bear Cottage’ – designed for, and in consultation with, those young people and their families.

The idea was quickly taken up and embraced by the community, spear-headed by the advocacy and fund-raising efforts of former Bear Cottage patients and their families, including Sian Grahl who died in 2016 aged 25 from symptoms related to a rare form of muscular dystrophy.

Sian had been in a wheelchair since 13 and had frequent respite stays at Bear Cottage.^[5] Her father had given her an old Ricoh camera when she was 9, and she developed a passion for, and talent in, photography and dark room techniques.^[6] In the year she died she won the Life Framer Open Call Award, with an image from her ‘Phoenix’ Series.^[7] It is a truly stunning series of photographs still available on the Life Framer website.

She donated $5,000 of her own money, and the proceeds of an exhibition of her photographs held after her death were also donated.^[8]

The newspapers heralded her legacy with one headline: ‘Conquering Fragility through Inner Strength’.

Sian’s fight and determination that there be a Big Bear Cottage was parallelled across this community of young people and their families who had advocated for so long to fill a huge medical gap and a social need.^[9]

In the closing days of Sian’s exhibition, the Government announced plans to build a young adult hospice on the site of the soon-to-close Manly Hospital.^[10]

There are two other significant contributions in bringing this dream to fruition. A young James Griffin had decided to take a tilt at Parliament. As with every member of Parliament I have met, his heart is in, and with, the community… and James was there at the announcement a month before he was sworn into parliament,^[11] seeing a promise he had made to families from Bear Cottage that the hospice would be built, becoming a reality.

The second development came with the introduction of Kay Van Norton Poche and her husband Gregory to the project. Learning that young people were often seeking respite care in nursing homes, as Kay said, “we’re better than that. Dignity begins with life, and each life has it. So… let’s give it to people that we can, when we can.”^[12]

Kay and Gregory’s philanthropic commitment to health care in our city is boundless. They donated a total of  $6 million dollars to AYAH’s build.^[13] In 2021, the first sod was turned;^[14] by the end of 2022, construction was complete with the help of State and Federal Governments and the Manly community;^[15] and, in early 2023, the doors were opened and the first patient, Jamieson Leeson, was welcomed.^[16]

More than 340 families have been supported since.[^17]

Dennis and I spend a lot of time in the community, especially with those living with a disability and with their families.

I am going to seek your indulgence to tell three more stories. All of which are a stark reminded that we should never judge and that we should never assume we know what is best.

The first story comes out of a visit to the Chris O’Brien LifeHouse Cancer Centre. We were introduced to a patient who had experienced a great deal of homelessness and poor medical care. Even with the wonderful care he was receiving at LifeHouse, he essentially looked dishevelled… not many teeth, pretty rough around the edges. For reasons that I still can’t fathom, Dennis asked him a question out of left field, “What do you like to read?”

The answer dumbfounded us – “Hamlet” he said. And so, we bought him a large print copy of Hamlet. We heard nothing else, nor did we expect to, until I received a letter from his sister telling us that he had died – and that his large print copy of Hamlet was his most precious possession.

When we visited AYAH with its world class design and facilities, for reasons I still can’t fathom, I asked Jamieson Leeson, Paralympian and the very first patient at AYAH, what else was needed. As to her answer, Anthony Schrembi^[18] looked stunned, and James had a look on his face as though he wanted to sack me as Governor if he could. Jamieson had said, “A bus… Once we are here, we have nowhere to go!”

AYAH, thanks to James and the local business community now has a bus.

Then there’s Bodhi Boele, a young transgender man whose abiding wish was to march in Mardi Gras… This was, to say the least, a challenge… his neurodegenerative condition was deteriorating, he had chronic neuropathic pain, and he required high dose medication.^[19]

One of the most iconic moments at that 2024 Mardi Gras, was Bodhi spinning doughnuts in his wheelchair in front of the cheering crowd.^[20] AS he mother said, “It was one of the highlights of his life,”^[21] only possible because his parents cared deeply, advocated for him, and worked with the staff at AYAH.

Those stories are stories of what matters: a commitment to giving control, opportunity, and a voice.

So, as you can see… AYAH is not really a place of respite. It is, as Emma Laubi,^[22] who you will hear from shortly, has said “[AYAH is where] you can feel what you need to feel.”^[23]

There are so many people who deserve recognition today: the young people themselves; the parents for their gentleness and care and advocacy; James Griffin; Professor Schembri and the staff of North Sydney Local Health District; Taiya and the team at AYAH… to all: thank you for being nothing short of extraordinary, as well as to everyone here, the generous community who continue to make this level of care possible.