Marea, 78, was considered to be the oldest person in the world with a genetic condition known as Angelman Syndrome, after Dr Harry Angelman, the Englishman who first described it in 1965.

Marea was non-verbal, and had been in care since she was eight.

Ms Bourke said Marea had gone into a sudden decline on June 21 and had been diagnosed as suffering end-stage renal failure.

Ms Bourke said Marea's illness began two days after being given the AstraZeneca vaccine.

She said an "adverse event" notice had been lodged with the Therapeutic Goods Administration.

She said an expert panel of 21 people, including international experts on Angelman Syndrome, had held a virtual meeting last week to examine whether her decline was related to the vaccine.

"In the end it was inconclusive," Ms Bourke said. "They didn't say it was, but they couldn't say it wasn't, either. They had the results of recent kidney function tests, and she was fine before hand."

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Ms Bourke said that once it became apparent that Marea would not recover, a palliative care plan was worked out with Marea's GP, other health professionals caring for her, and the group home management.

That palliative care plan included telling Ms Bourke - who was staying nearby - if anything happened, but she says she was not rung until after Marea had died and the ambulance had been called.

More importantly, she said, the plan included instructions "not to resuscitate".

"It's not the staff's fault, they're heartbroken, but there was a lack of communication from the management," Ms Bourke said.

The ambulance service confirmed attending just after 3.30am on Friday, as did fire and rescue. Police attended and said a report would go to the coroner.

Presentation to a 2018 Angelman Syndrome conference

Ms Bourke was among those opposed to the closing of the Hunter's three large disability care centres - the Stockton Centre, Tomaree Lodge, and Kanangra at Morisset.

In June 2019, she told the Newcastle Herald that Marea's advanced age was proof of the good care she received at Stockton and at Tomaree.

Marea moved to her group home in May last year.

In February, Marea was allegedly punched by a group home staff member, as we subsequently reported. Police confirmed last week the alleged assault was still being investigated.

The group home operator, New Horizons, declined to comment at the time about the alleged assault, and did not respond to requests for comment yesterday.

"Angelman's people are happy, and Marea was always smiling and laughing," Ms Bourke said.

She said Marea had a large following online in the disability and Angelman's communities, where she had been an inspiration to people living with Angelman Syndrome around the world.

"She had been gradually fading, sleeping peacefully these last few days," Ms Bourke said.

"This isn't the way she deserved to go."

Port Stephens state MP Kate Washington said "Marea's life was never easy, and in her final years the NSW government relinquished its duty of care to her".

"Marea was forcibly moved from her home of many years to supposedly improve her quality of life," Ms Washington said.

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