Lachlan and Hayley Webb are two siblings from Queensland, Australia who have inherited a rare and horrible disease. The brother and sister will at some point not be able to sleep ever again. The disease is hereditary and affects less than a million people and Fayal Familial Insomnia, or FFI, is at this time incurable and untreatable.
It prevents those who have the disease from ever reaching deep sleep or what is called REM sleep. Once it starts mental instability and physical deterioration are not far off, slowly the suffer goes madder and madder as days without proper sleep add up.
Hayley who is 30 and Lachlan who is 28 do not show any symptoms at this time but they have been diagnosed. They became aware of this genetic disorder after their grandmother became ill when Hayley and Lachlan Webb were still both jus teenagers. Then many other family members were diagnosed with the disease and passing away soon afterwards. Their mothers died from FFI at 61, their aunt passed away at 42. Their uncle on their mother’s side died when he was only 20.
Fayal Familial Insomnia affects the thalamus, which is the part of the brain that regulates sleep. When FFI starts it damages the nerve cells leading to small little holes in the thalamus. The thalamus cannot function properly leaving the sufferer to feel like they are awake the last six months of their life until they ultimately die. “In my early teens I remember becoming aware of it, aware we had this family curse.” Says Hayley Webb. The fact that it is such an unusual way to die, slow, coupled with insanity, and so hereditary it would be hard for Hayley and Lachlan not to see it that way, as a dreadful 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 know that FFI existed”
Ms. Webb went on to say she “remember(s) 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; you body is not allowing you to rejuvenate at all so its like being awake for the last six months of your life.” The brother and sister are well aware of the affects of the disease which waiting around for it to set in even more overwhelming.
The pairs best hope is that a cure or at least some sort of treatment comes into play before their FFI sets in. Now the pair have been involved in a pioneering study at the University of California. Eric Minikel and Sonia Vallabah lead the study and are deeply devoted in finding the cure.