Lachlan and Hayley Webb have been diagnosed with a hereditary disease called Fatal Familial Insomnia (FFI) which will make them never sleep again, ever.
Unfortunately, it will eventually kill them as there’s no treatment or cure for this rare illness.
28 year-old Lachlan and 30 year-old Hayley, from Australia became conscious of the disorder as teenagers, when their grandmother became ill.
Ms Webb, who’s is 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.”
The disease prevents sufferers from achieving deep sleep, leading to speedy mental and physical deterioration and affects less than 10 million people worldwide.
Nerve cells are damaged by FFI which in turn creates sponge-like holes in the thalamus, the part of the brain whose function is to regulate sleep. This inhibits the body from rejuvenating, thereby making the sufferer feel like they’ve been awake for the last six months of their life.
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.”
They have also lost a few family members to the disease including, their mother who died from FFI at 61, their aunt died at 42, their mother’s brother, also died from FFI at 20.
Lachlan and Hayley are participants in a case study led by Eric Minikel and Sonia Vallabah at the University of California in a bid to find a cure.