A brother and sister have been diagnosed with a rare, hereditary disease that will one day stop them from sleeping and eventually be fatal.
Lachlan and Hayley Webb from Queensland, Australia, are living with Fatal Familial Insomnia (FFI), which affects less than one in 10 million people worldwide.
The condition, which has no known treatment or cure, prevents sufferers from experiencing deep sleep.
As a result, their mind and body cannot rejuvenate and therefore deteriorate rapidly.
Lachlan, 28, and Hayley, 30, recently appeared on Australian TV show Nine News to raise awareness of the condition.
They spoke of how their mother died from FFI aged 61, while their aunt died from it aged 42 and their uncle died after suffering with the condition at just 20 years old.
According to The Independent, Hayley, who's a Nine News reporter, said: "In my early teens I remember becoming aware of it, aware we had this family curse.
"My grandma started getting sick and dying. Her eyesight went, she had signs of dementia, she was hallucinating and couldn't talk.
"Eventually she was diagnosed with FFI, that was the first time the family even knew that FFI existed."
News Seven
According to the Genetic and Rare Diseases Information Centre, FFI occurs when abnormal proteins clump together and accumulate in the brain, leading to tissue damage.
The first symptoms of FFI usually begin in mid-life and may include insomnia that worsens over time and vivid dreams when sleep is achieved.
These symptoms may be followed by high blood pressure, episodes of hyperventilation, excessive tearing and sexual and urinary tract dysfunction.
As the disease progresses, most affected people develop ataxia - the loss of full control of bodily movements.
Lachlan and Hayley are currently participating in a study at the University of California led by researchers Eric Minikel and Sonia Vallabah, who are trying to find a cure for the disease.
21 Rare Diseases
Brother and sister will never sleep again due to rare insomnia disease which will eventually kill them
The siblings have inherited Fatal Familial Insomnia, which affects just one in 10 million and could strike at any time
A news reporter and her brother have inherited a debilitating brain disease which will stop them from ever sleeping again - and eventually kill them.
Hayley Webb, 30, and her brother Lachlan, 28, suffer from Fatal Familial Insomnia, a harrowing condition which so far has no cure.
The extremely rare disease affects one in 10 million people worldwide, and the siblings have no idea when it will strike.
Tragically, the disorder has already killed their mother and grandmother.
But now, they are undergoing tests to try and find a cure before the disease manifests itself.
Lachlan and Hayley Webb ( Image:
They will take part in a pioneering study at the University of California led by US couple Eric Minikel and Sonia Vallabah.
Read more:
The brother and sister, from Queensland, Australia, are hoping that the disease - which has killed their aunt and uncle too - will finally be cured.
FFI causes irregular clumps of protein to damage nerve cells and make holes in the part of the brain that regulates sleep.
The siblings when they were young ( Image:
Read more:
Hayley said: "It could happen tomorrow but until we're in that danger zone we probably have a good 10 years up our sleeve and I am praying that there is a cure between now and then.
"I don't want to sit here while the sands through the hour glass pass waiting for it to trigger and for me to cark it.
"I want information, I want answers and I want a bloody cure."
One day, a terrifying hereditary illness will stop siblings Hayley and Lachlan Webb from ever going to sleep again and eventually it will kill them.
The brother and sister from Queensland have inherited the extremely rare disease known as Fatal Familial Insomnia (FFI) from their family and have no idea when it will strike, 60 Minutes reports.
The rare genetic disease, which affects less than one in 10 million people worldwide, is a debilitating brain disease with no treatment and no cure.
Scroll down for video
Queensland siblings Hayley and Lachlan Webb have inherited an extremely rare disease known as Fatal Familial Insomnia, which will one day stop them from ever going to sleep again and eventually will kill them
Anyone who has FFI is tragically destined to die because it stops them from ever falling into a deep sleep and leads to rapid mental and physical deterioration.
Hayley, 30, and Lachlan, 28, first became aware of the genetic time bomb in their family when they were teenagers and their grandmother became ill.
'In my early teens I remember becoming aware of it, aware we had this family curse,' Ms Webb said.
'My grandma started getting sick and dying. Her eyesight went, she had signs of dementia, she was hallucinating and couldn't talk. Eventually she was diagnosed with FFI, that was the first time the family even knew that FFI existed.'
Ms Webb, who is a Channel Nine news reporter, said her mother started showing the first symptoms in 2011.
Hayley, who is a Nine News reporter, is taking part in a pioneering study at the University of California to help find a cure for the brain disease that affects less than one in 10 people worldwide
Hayley and Lachlan (pictured with their parents) first became aware of the genetic time bomb in their family when they were teenagers and their grandmother became ill
The 30-year-old television reporter said she first became aware of the 'family curse' when she was a teenager and her grandmother started to show symptoms. Her grandmother passed away aged 69
'I remember leaving for work to my new post on the Sunshine Coast and mum saying 'have a great day, I'm so proud of you' and then later that week coming back and she was calling me Jillian and she thought I was the housekeeper. It was incredibly aggressive,' she said.
The aggressive disease took hold giving her full blown hallucinations and she tragically passed away after six months.
FFI causes abnormal clumps of protein that damages nerve cells and eventually causing sponge-like holes in the thalamus - the part of the brain that regulates sleep.
'Your body is not allowing you to rejuvenate at all so it's like being awake for the last six months of your life,' Mr Webb said.
Hayley's mother started showing the first symptoms in 2011 but the aggressive disease took hold and six months later she died
Hayley, pictured with her mum after she was diagnosed, said her mother had full blown hallucinations towards the end. The disease begins with exhaustion and leads to a decline in mental and physical capabilities
Hayley and Lachlan say they have no idea when Fatal Familial Insomnia will strike. There is currently no treatment and no cure for the debilitating brain disease
While there is currently no cure, the siblings are taking part in a pioneering study at the University of California being led by US couple Eric Minikel and Sonia Vallabah to help find a remedy.
The siblings have no idea when the disease could strike for them.
'My aunty passed away at 42, my mum passed away at 61, my grandmother passed away at 69 - mum's brother died at 20... we're just hoping we're not one of the young ones,' Ms Webb said.
'It could happen tomorrow but until we're in that danger zone we probably have a good 10 years up our sleeve and I am praying that there is a cure between now and then.
'I don't want to sit here while the sands through the hour glass pass waiting for it to trigger and for me to cark it. I want information, I want answers and I want a bloody cure.'
Lachlan underwent tests alongside his sister in San Francisco to help with research into the fatal disease
The siblings say they are determined not to let Fatal Familial Insomnia rule their lives
While there is currently no cure, the siblings are taking part in a pioneering study at the University of California being led by US couple Eric Minikel and Sonia Vallabah (pictured) to help find a remedy