Ann is one of a legion of Indigenous carers looking after loved ones in our community. Her story as a grandmother is especially touching.

Ann is the grandmother and full time carer of her granddaughter Kayla-Marie.

Diagnosed with a terminal illness, Kayla-Marie has been paralysed since she was a baby.

“She was struck down with her illness at the age of four months. It’s called Glutaric Acaduria Type One,” Ann said.

“It happened in a matter of 15 minutes, one minute she was our normal girl and then she was twisted up like a little withered tree.”

After she was diagnosed with the illness Kayla-Marie spent seven months in Westmead Hospital before she was allowed to go home. Kayla-Marie is now six-and-a-half and for the last three years Ann has been looking after her seven days a week around the clock.

“I look after her on my own, I have to feed her and medicate her through a tube in her stomach,” Ann said. “I have to wash her, lift her and do everything for her that any normal child would need when they’re sick. I do all the very basic, daily things she needs because she’s totally dependent on me.”

Ann said children with Kayla-Marie’s disease usually have a short life expectancy. In order to make their life as enjoyable as possible they need a lot of really good care and Ann admits it can often be heartbreaking work.

“Sometimes it’s very emotional especially when she’s sick and you can’t do anything for her. I always try and look on the positive side. When I look down and see that beautiful little face smiling back at me, then I keep going for her sake.”

When Ann first started looking after Kayla-Marie she had no one helping her, but now she gets a small amount of respite care to help her rest and stay strong.

“I get three hours a week of respite care but now they’re going to try and get some overnight respite care for me. My day doesn’t end at five. It goes all through the night because Kayla-Marie can’t bring her saliva up on her own and I have to help her to make sure she doesn’t choke,” Ann said.

Ann says that when she gets respite care she uses it to catch up on her sleep as it is very important she gets her rest. Ann didn’t always have respite care. In fact, for many years she didn’t know who to turn to for help.

However since finding the Indigenous Disability Advocacy Service she says things have improved for her.

“When I feel down I usually ring up the Indigenous Disability Advocacy Service,” Ann said. “They’re like family there and sometimes I ring them and I say, ‘I’m feeling sorry for myself’ and when I let it all out then I feel better and I can start again.”

Ann says sometimes she feels self-centred when she complains, especially when her granddaughter is suffering so much, but she knows it is important to talk about her feelings.

“If you could see my girl and see the way she suffers then you’d know my suffering is only minute compared to hers. I sometimes think, ‘how can I be so selfish when this little girl is suffering?’ They tell me you shouldn’t feel guilty but you just can’t help it sometimes.”

Kayla-Marie needs a lot of equipment to help with her condition and Ann said that at the beginning she didn’t know who could help her buy the equipment, so initially she paid for a lot of the equipment herself.

“I did garage sales and made the money to buy a lot of the equipment. You get so frustrated because the child needs these things and that’s where most of your frustrations come in,” she said.

Ann said connecting up with other people who are in a similar situation can help you to feel better and also to better understand how the system works.

“The only advice I can offer is to talk with your friends and family or to go to a carer’s group and put your problems on the table,” she said. “A lot of people find it easier once they find out there is someone else in their situation who can guide them.”

Thanks to Carers NSW for this story. You can find other Indigenous carer stories on their website at http://www.carersnsw.asn.au/

You can find out more about the Indigenous Disability Advocacy Service at http://www.idas.org.au/ Or contact them via email at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it or phone on

02 9687 7688.

The Indigenous Disability Advocacy Service is funded to service Indigenous persons with a disability in Western Sydney and Regional centres in areas of high need in NSW, in consultation with Family and Community Service and Department of Ageing Disability and Home Care.

They can assist Indigenous people with most types of disabilities, their families and carers when the person they are looking after needs help, especially if they have been unfairly treated or are confused about a big decision.