Fatal Familial Insomnia

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.

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. 

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 said her mother started showing the first symptoms in 2011.  

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

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.'

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