Bathurst woman Rachel Browne was called as a witness on Wednesday to the Sydney hearing of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

On the stand she described how her 16-year-old son Finlay lived with Down syndrome and autism, she shared the challenges of obtaining appropriate care for him during his life and the final days before his death.

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She also told commissioners that when her beloved son left their home for the last time to be rushed to hospital, that he put his arms around his parents and said: "I love you, Mum. I love you, Dad".

That day had started out like any other, it was the first week of school holidays for the Carenne School student.

However, at around lunchtime Finlay became pale and began vomiting. He was in "terrible pain" and had blood in his faeces.

He collapsed as the family arrived at Bathurst Hospital's emergency department.

Hours later, at 7.30pm, a CT scan revealed significant intestinal or abdominal obstruction.

Mrs Browne said while there were initial discussions among the medicos that Finlay be transferred to Westmead Children's Hospital, this was not done until 5.30am the following day.

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"There was a distinct lack of urgency. There was no obvious signs that people were doing anything," she said.

Finlay spent the next 71 days at Westmead, 65 of them in the paediatric intensive care unit, and he underwent 12 surgeries.

"The majority of his small bowel was removed ... he would never be able to eat or drink again," Mrs Browne said.

"As a result of his injuries, his liver and kidneys were shutting down.

"He kept saying, 'Mum, I want to go home'."

Following Finlay's final surgery, his parents made the heartbreaking decision to withdraw treatment.

The final blow to his family was that on Finlay's death certificate Trisomy 21, or Down syndrome, was listed among the causes of death.

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Since then, Mrs Browne has made an official complaint to Bathurst Hospital, written to the NSW Heath Minister and pursued obtaining a Coronial Inquest.

She also made applications to access Finlay's hospital records.

Six months after his death, Mrs Browne addressed Bathurst Hospital staff.

"I wanted clinicians to know what the ramifications of their inaction were to not only Fin[lay] but to his family, to his friends," she said.

"This young man had a life, a life well-lived. He was just not a person with a disability. He was a human being."

Mrs Browne would also like policies to be changed so that the disability of a person should not be included on the death certificate if it was not part of the cause of the person's death.

The commission continues.

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