Hayley and Lachlan Webb Photo: Contributed
Hayley and Lachlan Webb Photo: Contributed

Family open up about fatal sleep nightmare

EVERY day Hayley and Lachlan Webb wake up not knowing if they'll ever be able to go back to sleep again.

Hayley is a familiar face around Rockhampton, having worked as a journalist in the region from 2011 to 2012.

The Channel 9 reporter and her brother have inherited an extremely rare disease known as Fatal Familial Insomnia, which has already taken the lives of their mother, aunt, grandmother and uncle.

The rare genetic disease, which affects only 40 families in the world, is a debilitating prion disease with no treatment or cure.

It is caused by a change or mutation of the PRNP gene, which allows it to clump together in the thalamus region of the brain, eventually destroying the cells there.

The mutated gene "eats" holes in the brain and can lead to the inability to sleep.

The siblings' story was seen on 60 Minutes on Sunday night.

"In my early teens I remember becoming aware of it, aware that we had this family curse," Hayley said.

"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."

Hayley's mother started showing the first symptoms in 2011 and passed away after just six months.

"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," she said.

While there is no known cure, the siblings are part of a pioneering study at the University of California being led by US couple Eric Minikel and Sonia Vallabah to help find a remedy.

"My aunty 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," Hayley said.

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