Community rallies together to support woman with neurofibromatosis

"No-one deserves to live like this.”

A group of south-west Sydney medical experts and volunteers have rallied to provide life-changing surgery to one special woman.

West Papua resident Natalia Apaseray, 26, was born with neurofibromatosis, a genetic condition that causes tumours to form in the brain, spinal cord and nerves.

The Royal Children’s Hospital Melbourne estimates that neurofibromatosis affects one in 3000 Australians, but is often detected early and treatment begins at a young age.

Ms Apaseray’s condition was so extreme it caused a malformation on the right side of her face.

Long-term Rotary member Peter Gray first heard about Ms Apaseray’s story back in February.

Mr Gray, president of the Rotary Club of Phnom Pehn, was contacted by a medical expert who found Ms Apaseray during a visit to West Papua.

“There was a US medical team in Indonesia that found Natalia and asked our club for help,” he said.

“They sent me a photo of Natalia and I thought ‘how can we help?’

“No-one deserves to live like this.”

Mr Gay jumped on the phone and called some fellow Rotary members.

He was put in touch with cardiothoracic surgeon Dr Bruce French and plastic and reconstructive surgeon Dr Michael Kernohan at Liverpool Hospital.

Mr Gray said the pair agreed that “we had to do something” to help Ms Apaseray.

“They lobbied for Natalia and convinced the Liverpool Hospital’s board to allow her to be a humanitarian patient,” he said.

“There is a team of medical professionals helping and they are all working voluntarily.”

Several Rotary clubs joined together to fundraise for Ms Apaseray and her carer Ema to fly to Australia for a full medical assessment at Liverpool Hospital earlier this month.

Ms Apaseray has now returned to West Papua to spend Christmas with family before flying back to Australia in early 2019 to undergo radical surgery.

Treatment is expected to take several months and will include the removal of a significant portion of her face and a series of facial reconstruction procedures.

Ms Apaseray will stay with Rotary Club of Liverpool West president Jim Rudling in between hospital visits.

Mr Rudling, of Prestons, said the surgery would “give her a better life”.

“The assessment process was quite traumatic for Natalia so we’ve got a few tough months ahead of us,” he said.

Mr Rudling said Rotary clubs had raised more than $40,000 to support Ms Apaseray on her journey.

“Natalia is a very lovely young lady,” he said.

“She was very reserved when she first arrived [in Australia] and it took her a few days to settle in.

“She’s very appreciative of the help she is getting.”