One day, these siblings will wake up and never go back to sleep again.
It sounds impossible, but sadly this is the reality for brother and sister Lachlan and Hayley Webb. The pair (who are 28 and 30 respectively) suffer from Fatal Familial Insomnia (FFI), a rare genetic brain disease which will eventually kill them.
Both their grandmother and mother died due to the condition, which effectively stops you sleeping. Obviously, this isn't good for your body. It leads to rapid mental and physical deterioration which, as previously stated, leads to an untimely death.
Advert
Hayley is a news reporter for Nine News in Queensland, Australia, and is currently documenting their journey whilst they take part in a study at the University of California to help find a cure.
The brain disease only affects less than 10 million people.
Credit: Nine News
The Sun reported that Hayley said: "In my early teens I remember becoming aware of it, aware we had this family curse.
Advert
"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."
Her mother passed away six months after the condition's symptoms began appearing. She suffered from hallucinations as the condition raged war on her body.
Hayley said: "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."
The pair are ensuring that they do as much as possible to help find a cure for this incredibly cruel disease.
Advert
She continued: "My auntie 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.
"It could happen tomorrow but until we're in that danger zone we probably have a good ten 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."
Her brother added: "Your body is not allowing you to rejuvenate at all so it's like being awake for the last six months of your life."
Advert
Good luck to the pair of them, I wouldn't wish that on my worst enemy.
Incredibly commendable actions from them both.
Words by Mel Ramsay
Featured image credit: Nine News
Featured Image Credit:Topics: Sleep