Sarah died in 2004 from a terminal cancer, but for two years her family had been through something Mark said, had he not been through it, something that looked like a conspiracy theory of the worst kind.

Sarah became ill in 2002 and a misdiagnosis of pregnancy sparked a chain of events that ultimately resulted in Sarah being declared a ward of the state and at one stage being confined in a hospital for three months, without seeing family or friends.

In fact Sarah had a rare cancer and in the intervening months as her family sought the best treatment for their daughter, those decisions were taken from their hands, and made by doctors and government agencies.

Mark said in telling Sarah’s story the family was not looking for sympathy or attention, but they wanted to draw attention to the situation they lived through, one that “every person can be affected by.”

“If what happened to us was still not happening, we wouldn’t have written the book,” he said.

In October 2004 Sarah asked Mark to tell her story.

“I don’t know what made Sarah say it, but I could never ignore it. I waited five years for the feeling to go away but I know if I didn’t do it I would never have peace again in my life,” he said.

“What Sarah wanted was change, for no other child to go through what she went through,” Mark said.

The result, is Sarah’s Last Wish, written by journalist and health care professional Eve Hillary.

“What we are doing, it will bring change to the community,” Mark said in launching the book.

He also thanked the local community for their help during Sarah’s illness. Help he said that came in many forms and from many people.

A turning point for the family however was when two letters were published in the Advocate, letters Mark said “shook DOCS to the core”. What followed, more than 2000 complaints from the local community to the department regarding the handling of the Westley’s case.