Over the years the disease flared many times, impacting on Ms Hamilton’s ability to speak, walk and look after herself.

The baby girl – Stephanie Pinilla, now a teenager in the early days of her HSC studies – became a full-time carer to Ms Hamilton, in a bittersweet reversal of the typical mother-daughter dynamic.

Stephanie will receive a high commendation at the NSW 2013 Carers Awards in Sydney today in recognition of her dedication to her mother over many years.

The ceremony is part of Carers Week, and also places Stephanie in the running for the Carer of the Year Award. 

‘‘It’s difficult explaining our situation to somebody else,’’ said Stephanie, a student at Lake Illawarra High School. 

‘‘I don’t want them to pity me because I kind of think if they were in my shoes they would step up and help the ones they love. But sometimes it’s hard. They say they understand your situation, but they can’t.’’ 

As a full-time carer, Stephanie can spend only 25 hours a week out of her mother’s company. The family is aided by a nurse who visits their Mount Warrigal home for about 30 hours a week. Stephanie starts school late some days, and finishes early on others, to meet her caring commitments, which also involve looking out for her 11-year-old brother Jared.

She usually wakes and gets her mother dressed and to the bathroom, does the dishes and a load of laundry. 

‘‘I usually make Jared’s school lunch the day before and make sure his notes are handed in on the right days for his excursions,’’ Stephanie said. 

‘‘I might not have had the rebellious years that my friends could be having, but it’s going to benefit me in the long run. 

‘‘If I focus on my schooling I’m more likely to succeed. And when I decide it’s time for me to leave home I’ll know.’’ 

But questions about the future – if, and how Stephanie will leave home for study or other opportunities – are difficult for both mother and daughter. 

Ms Hamilton wants Stephanie to aim high, and encourages her to pursue a career in medicine or teaching. 

But she worries too about her own future, and doesn’t want to end up in a home being cared for by strangers.

‘‘I think about [the future] all the time,’’ Ms Hamilton said. ‘‘It kills me.’’ 

Stephanie is one of 10 carers who will receive a high commendation award today. They  are among more than 850,000 unpaid family carers in NSW.