Later this year Ms Greene will attend the world’s first conference on Potocki-Lupski syndrome – the extremely rare disorder affecting her baby girl McKayla.

There, in Texas, she will meet the researchers involved in the identification of the condition – Drs Lorraine Potocki and James Lupski – and join forces with others living with the syndrome.

McKayla was four months old when she was diagnosed with Potocki-Lupski syndrome – the duplication of the chromosome 17 which affects feeding, muscle tone, ability to learn and can also include autism and sleep apnoea.

The Kurri Kurri baby, now 18 months old, is one of six children in Australia with the disorder and one of 50 across the world.

“There is still so much people don’t know about this syndrome, but they are conducting studies on children with the condition in America, so hopefully something will come out of it,” Ms Greene, 29, said.

During the conference, to be held in Houston in July, Drs Potocki and Lupski will release their latest findings on the syndrome and hopefully shed some light on McKayla’s future.

“I just find it very frustrating because the doctors here don’t seem to know how to care for McKayla and have no idea what medications she should be using. So I just want to go over there and get as much information as I can and to be where the experts are.”

Before her diagnosis, it was thought McKayla had cerebral palsy but further tests proved otherwise.

“I knew something was wrong with McKayla from the word go, but no one would believe me, so

I kept changing doctors,” Ms Greene said.

“She was a very floppy baby and I had to syringe feed her because she wouldn’t suck.”

Ms Greene doesn’t know what the future holds for her daughter but she will do all she can to help her along the way.

“We don’t know if she will be able to walk or talk or what will happen with her eyes or her hearing,” Ms Greene said.

“A lot of children with Potocki-Lupski do deteriorate and lose their eyesight, their hearing, their teeth may die off and they lose muscle tone, but we’ll have to wait and see.”