Miracle Mollyjane's world first story of survival

Sally Bowrey

A young Newcastle girl born with a rare metabolic disease is defying incredible odds simply by living.

She is only three, but Mollyjane Boyson is the oldest person in the world suffering from the condition.

Her family is now on a mission to find a cure.

Mollyjane is the longest living survivor of a condition called Carnitine Acylcarnitine Translocase Deficiency.

"Making it to one was massive, making it to two was massive, and when she hit three we just went praise God we've made it," mother Jessica Boyson said.

Her body cannot break down fats, and if Mollyjane isn't fed regularly her body fails.

Mother Jessica said she has needed to get up every two to three hours for Mollyjane, since birth.

Doctors say it's a miracle she's alive. She has been in and out of hospital her whole life and has had countless operations, having beaten heart, liver and brain failure.

She has shown doctors she's different from others born with the condition.

"They don't feed, they don't run and they are not neurologically normally and she is quite different to that," Dr Kaustuv Bhattacharya from Westmead Children's Hospital said.

Mollyjane is certainly rare, most babies in the world do not survive past 48 hours with the condition.

She is the only child in Australia living with it, and one of just 30 children in the world known to have the disease.

Her family has raised money to support the doctors at the Children's Hospital at Westmead.

They hope to raise more to find a cure.

If you would like to donate visit the Everyday Hero website.