Lachlan and Hayley Webb both have inherited Fatal Familial Insomnia which will one day stop them from sleeping ever again
Lachlan and Hayley Webb both have inherited Fatal Familial Insomnia which will one day stop them from sleeping ever again

Brother and sister inherit disease that will stop them ever sleeping again

'Your body is not allowing you to rejuvenate at all so it's like being awake for the last six months of your life'

Matt Payton@paytesy89
Tuesday 03 May 2016 10:32
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A brother and sister have inherited a disease that will stop them from ever sleeping again - and which will eventually kill them.

Lachlan and Hayley Webb from Queensland, Australia, suffer from a rare hereditary disease called Fatal Familial Insomnia (FFI). They do not know when it will strike.

Affecting less than 10 million people worldwide, there it no known treatment or cure for the illness.

It prevents sufferers from achieving deep sleep, leading to speedy mental and physical deterioration.

Lachlan, 28, and Hayley, 30, first became aware of the genetic disorder when their grandmother became ill when they were teenagers, Nine News reports.

Their mother died from FFI aged 61, while their aunt died at the age of 42. The siblings' uncle, their mother's brother, also died from FFI aged only 20.

How much should you sleep?

FFI damages nerve cells which leads to sponge-like holes in the part of the brain that regulates sleep - the thalamus.

This then prevents the body from rejuvenating and makes it feel like the sufferer is awake for the last six months of their life.

Ms Webb, 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."

Lachlan Webb, 28, participating in a study at the University of California looking for a cure

Ms Webb added: "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.

"Your body is not allowing you to rejuvenate at all so it's like being awake for the last six months of your life."

The pair have been participating in a pioneering study at the University of California led by Eric Minikel and Sonia Vallabah, who are trying to find a cure.

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