Family and friends of Lorne launched the Go Fund Me page this week after Lorne's family exhausted their savings seeking treatment for him.

Family friend and fundraiser organiser Grant Maskill-Dowton said he had been impressed by the way the community had already rallied to support the young family.

Mr Maskill-Dowton said surgery had been booked in Sydney next week but despite having their own private health insurance, there is still a gap of $40,000 the family would have to pay.

Mr Maskill-Dowton said after years of seeing specialist after specialist and having test after test, they finally have a diagnosis for what is causing Lorne's symptoms.

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"Lorne has a pineal cyst measuring 1.6 centimetres in the middle of his brain," he said.

"This cyst is compressing the cerebral aqueduct and impacting the tectal plate. This compression limits the flow and circulation of cerebralspinal fluid around the brain.

"If a blockage occurs in this area, a build-up of fluid could be life threatening."

Mr Maskill-Dowton said Dr Charlie Teo, a world-renowned specialist in this area based in Sydney, has confirmed Lorne's pineal cyst was the cause of the symptoms affecting his everyday life.

Lorne has not been able to work for over 12 months and he cannot participate in all the activities he would like to do with his two beautiful children.

Mr Miskell-Dowton said Dr Teo had given the family hope.

He said he believes that removal of the cyst will relieve Lorne's symptoms and help to get him back to leading a life something close to what it used to be.

He said the organisers are asking the community for help to make this surgery happen for Lorne as soon as possible.

Donations can me made at Go-Fund-Me Brain Surgery for Lorne Ryan.