Mum Sonya Holmes says Heidi is a "happy little chappy. She's eight and she shows that she's eight. She can chuck a tantrum like the best of them.

"Her mind is quite active. She can't talk and she can't walk but my those students love her."

Heidi has level five cerebral palsy and a severe form of scoliosis for which there is no treatment.

This great need for intensive care for Heidi places an incredible burden on her mum and her sister Amelia, 10.

Enter Debi Finlay, the first person in country NSW under the Sydney Children's Hospitals Network palliative care family support volunteer program.

She had been volunteering to help families of children in palliative care in Sydney before moving to Orange two years ago.

Under the scheme she was matched up with Heidi's family and since last December she has been helping them by volunteering for up to four hours a week in their Orange home.

"This is a pilot program and I am the pilot," she said.

"It's not a respite [role]. I might do the dishes or hang up the washing. It depends on what the family needs. Basically I'm a support for Sonya."

Mrs Finlay said she helped Amelia with her homework and helped the family go on outings. "It's not easy. It's a real challenge, Sonya never, never stops smiling. She is a real wonder woman."

Mrs Finlay said training for other volunteers to go into country areas was starting.

"I was an early childhood teacher before I retired. I just wanted to be part of the community. I wanted to do something that matters to somebody," she said.

Ms Holmes said Mrs Finlay's arrival had been a great help.

"Heidi has been palliative for two years now. She only has two levels, she's either well or she's in the Intensive Care Unit," she said.

Ms Holmes said she received other assistance for Heidi's medical needs but Mrs Finlay provided valuable help for the family.

"It is hard to find people who understand and to talk to. Debi coming in is just making that load lighter. For eight years I have had that load all on my own," she said.

"Palliative care can last for many, many years. It is comfort, not terminal. It means making life better."

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