One day this brother and sister will never be able to sleep again because of a rare and incurable brain disease

By admin
05 May 2016

One day, Hayley and Lachlan will stop sleeping altogether – which may eventually kill them.

Yes, most people crave a good night’s sleep – but for Hayley Webb (30) and her brother, Lachlan (28), their insomnia could cost them their lives one day.

Both have an incurable brain disease which has already killed their mother and grandmother. It’s extremely rare and occurs in only one in 10 million people – worldwide there are only 28 families that carry the gene for fatale familial insomnia (FFI). Anyone with this gene will one day stop sleeping altogether, which causes mental and physical deterioration and is eventually fatal.

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Hayley and Lachlan, from Queensland in Australia, became aware of the hereditary time bomb in their cells for the first time in their teens when their grandmother fell ill.

“My grandma started getting sick and was dying,” says Hayley, a reporter for the TV news network Channel Nine. “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 FFI existed.”

In 2011 her mother started showing the same symptoms.

“I remember leaving for work to my new post on the Sunshine Coast and mom 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 incredible,” Hayley says. Like her grandmother her mom also started to hallucinate. She died six months after falling ill.

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“Your body is not allowing you to rejuvenate at all so it’s like being awake for the last six months of your life,” Lachlan explains. FFI causes protein clots that damage nerve cells, which create sponge-like holes in the talamus, the part of the brain that regulates sleep. It’s similar to the neuro-generative disorder that causes so-called “mad cow’s” disease.

Hayley and her brother don’t know when the disease will hit them. Their aunt died at age 42, their mother at 61, their grandmother at 69 and their uncle at 20.

“It could happen tomorrow but until we’re in that danger zone we probably have a good 10 years up our sleeve and I’m praying that there’s a cure between now and then,” Hayley says hopefully.

“I don’t want to sit here while the sands pass through the hour glass waiting for it to trigger and for me to crack it.

"I want information, and I want a bloody cure.”

Meanwhile she and her brother cycle a lot and her work allows her to explore the world.

At the University of California in America, couple Eric Minikel and Sonia Vallabah are conducting a study in the hope of finding a cure for FFI. Sonia witnessed her 52-year-old mother’s deterioration from the disease four years ago, caught somewhere between being awake and asleep.

“She was just lucid enough to know something horrible was happening to her,” Sonia says. She’s hopeful that they’d be able to find a way to save other sufferers’ lives with medication.

“Our story is unfolding in real time. And while we’re optimists, we have no idea how it ends.”


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