JESS Rothwell said when her daughter Mollyjane was born, doctors told her to take her baby home and love her before she lost her.
But Mollyjane, now 10 years old, has become a beacon of hope for other children with rare diseases.
The Adamstown local is one of the faces of this year's Jeans For Genes campaign.
"Looking back, if someone had said to me that she would make 10, that she would be walking and talking, I would have never believed them," Mrs Rothwell said.
Mollyjane - or MJ - has been amazing medical professionals ever since she was diagnosed with Carnitine Acyl-Carnitine Translocase as a baby.
She is one of two children known to be living in Australia with the rare and life-threatening genetic disease, and most babies born with the condition do not live longer than 48-hours.
The disease inhibits the breakdown of fats and proteins, causing a toxic build-up in the liver.
"She can go from being OK to organ failure and catastrophic deterioration in about 20-to-30 minutes," Mrs Rothwell said.
"You can't see it. A lot of metabolic conditions are like that. A car can look amazing on the outside, but when you drive it away it doesn't work properly. That's like MJ.
"She looks perfect, but she doesn't have a proper running motor inside. We have to do that for her."
Mrs Rothwell said she never had the "baby beside her bed" experience. Within three hours of her birth, Mollyjane was taken away.
"At that stage she had suffered severe brain damage, she had a damaged heart, and her prognosis was really, really poor, but I didn't care - I just wanted to get her home," Mrs Rothwell said.
"She is making history at the moment. No one expected her to make it this far. It has been a battle. We have fought so hard to get here."
Mrs Rothwell said MJ was a bright happy girl throughout the day. Throughout the night, she needed to be fed or medicated every three hours.
"There is a lot that goes on behind the scenes," she said.
"We just have to be three steps ahead of her."
The family hoped people would support their fundraising efforts via myjeansforgenes.org.au.
"I don't want any other families to go through what we have gone through. What she has gone through," Mrs Rothwell said. "Childhood diseases are so cruel. It strips them of their childhood.
"And without research, there is no hope."
