SUNSHINE Coast builder Adrian Chesterton died quickly after been struck down by a rare disease that only affects one in one million of the population.
SUNSHINE Coast builder Adrian Chesterton died quickly after been struck down by a rare disease that only affects one in one million of the population.

No pain, no cure, no hope - a family's torture

A RARE brain disease that impacts only 25 Australians a year has claimed the life of a 56-year-old Nambour builder only four months after his illness was diagnosed.

A funeral service will be held today for much-loved builder and father of three Adrian 'Chesto' Chesterton of Perwillowen who family relative Tim Murray said had lost his life to Creutzfeldt-Jakob Disease, for which there is no cure.

So rare is the condition it affects no more than one in a million of the population.

"There was nothing," Mr Murray said. "No hope to hang on to."

Where there was no hope, however, there has been comfort with friends and the community rallying around the family, organising a meal chain that has continued for four months and a fundraising function at Alex Surf Club that collected $20,000.

Unable to work since March the family had been left with no money coming in.

Creutzfeldt-Jakob Disease is related to Mad Cow Disease in animals and leaves holes in the brain, eventually shutting down every function.

"It was so bloody quick," Mr Murray said.

"Adrian started to lose balance and thought it was vertigo."

By the time he flew to a family funeral in Canberra in June he was losing coordination and had, uncharacteristically, backed his car into a pole.

Mr Murray said Adrian had returned from the funeral in a wobbly state and checked himself into Sunshine Coast University Hospital. He was never to return home.

"The hospital was amazing," he said. "They went over and above doing every test under the sun. There was one young neurosurgeon who I think sat up every night for a week going over everything."

Short of a dangerous brain biopsy the only way to diagnose the disease is by ruling out every possible other cause. The autopsy after death was conclusive.

"Adrian was not in any pain, there was no treatment, no cure, he was just quickly dying," Mr Murray said.

"It was torture for everyone. He would use his eyes and smile every now and then but in the last week he was just lying there with no ability to communicate."

Mr Murray said researchers in the United States and Germany were working around the clock to solve the puzzle to the disease in expectation that if they do, they would also come to a better understanding of the diagnosis and treatment of Alzheimer's and dementia.

Mr Chesterton passed away on September 26 under palliative care at St Vincent's Hospice at Stella Maris Church.

He is survived by his wife Jenny who taught for many years at Stella Maris Catholic Primary School before taking on the books of the family business and the couple's three children, Camille, 28, Joe, 26, and Olivia, 23.

Mr Murray said Adrian had been fanatical about horses and horse racing, the jockeys who rode them and their form.

He was also involved in breeding with a new foal expected to arrive at the family property today at about the time Mr Chesterton's funeral service will be conducted from 10.30am at the Gregson and Weight Chapel on Wises Road, Maroochydore.

The family said donations to would be appreciated.