But none of them knows what tomorrow holds for the precious little girl from New Lambton.

Mollyjane is one of 30 babies worldwide, and the only baby in Australia, diagnosed with deadly Carnitine Acyl-Carnitine Translocase Deficiency.

To date she has amazed the medical profession by defying the odds and making it to six months when others with the condition died within 48 hours of birth.

Mollyjane is missing an enzyme in her DNA that breaks down fat and protein in the food she eats. This causes a build up in her liver which becomes toxic, poisoning her tiny body.

Yesterday her parents Daniel and Jessica Boyson told their only child's story to make people aware of this rare and insidious condition and to thank the community for helping raise $17,000 towards Mollyjane's medical treatment.

Unfortunately since the fund-raiser, several weeks ago, there has been a setback with Mollyjane's pram and feeding pump, valued at $2500, stolen from John Hunter Hospital.

While Mrs Boyson said the family's situation was frustrating and upsetting, they managed to keep a positive demeanor.

"There is no survival and when we ask the doctors what happens next, they say they don't know," she said.

"They have no answers because there is no research.

"We fight so hard for Mollyjane each day and any little thing we think is wrong we make sure to a T that protocol is followed through."

Mollyjane's pediatrician Dr Don Anderson said it had been an enormous challenge treating Mollyjane and an enormous challenge for her family.

"It's a very frightening condition for everyone to live with but she has a strong support network and her parents have certainly devoted their lives to doing all they can to help her," Dr Anderson said.

"They are constantly living with the fear of a catastrophic deterioration."

Dr Anderson said he had only read about Mollyjane's condition in medical journals.

Mollyjane was undergoing intensive physiotherapy, occupational therapy and classical music therapy, Mrs Boyson said.

"We are working so hard and while ever she smiles at us we will keep going," she said.

"Her smile is amazing. She is an amazing baby and our absolute world."

The family's dedication to Mollyjane's treatment goes without saying after medical specialists told the couple to cease all treatment when she was just five days old.

"She was in a coma and we were told that these babies don't survive and we should do what's best for her. We just fought," Mrs Boyson said.

"We wanted to tell Mollyjane's story so we could thank all those people and businesses who have helped us. There are too many to thank individually but we do want to say how much it means to us and let them know that there is still some hope."