Ex-Channel Nine reporter Hayley Webb’s brother has died from a rare brain disease which stopped him from ever being able to fall asleep, until it finally killed him.
Lachlan Webb and his sister were both diagnosed with Fatal Familial Insomnia (FFI) which lies dormant until it can suddenly activate and then kills within months.
Lachlan, 36, was given six months to live when the disease finally triggered in him in April 2023, but he managed to survive until this month.
The devastating disease had left Lachlan wheelchair-bound and struggling to speak while suffering crippling memory loss and deteriorating eyesight.
But the torturous hallmark is a growing inability to sleep which slowly destroys victims of the disease.
His sister Hayley, 39, lives with the constant fear of it activating in her too after she lost her mother, Narelle, two uncles, an aunt and a grandmother to the disease.
Mr Webb leaves behind his wife Claire and his son Morrison.
Today host Karl Stefanovic shared an emotional tribute during the morning show on Thursday after previously spotlighting Lachlan’s battle with the bizarre disease.
‘I want to take a moment to remember Lachlan Webb, who has passed away at the age of 36,’ he said.
‘You might remember we brought you his story last year, Lachlan. A remarkable man battling an unimaginable curse.
‘So I met him, along with his beautiful sister, Hayley, and was so touched by their bond. Everyone here at today is thinking of the Webb family.’
Hayley revealed last year how the disease had ‘triggered’ in Lachlan much earlier than anyone had expected and that he was given just six months to live.
She said it put life into perspective for her and her family as it raised fears that she would not have long left to live.
‘It’s just, like, been such a stark reality check that it’s not a guarantee that we’re gonna get to 60, it’s not a guarantee we’ll make it to 50,’ Hayley told the Courier Mail.
‘I’ve got a three-and-a-half year-old and a baby on the way, who I desperately want to see grow up.’
The siblings were first diagnosed with FFI in 2015. Their mother died from the disease aged 61.
Hayley admitted it felt like their ‘worst nightmare’ when the disease triggered in her brother,
‘We just couldn’t believe that it has struck so early,’ she said.
FFI was activated much later in life for her other family members although one of her uncles died aged just 20 from the disease in the 1970s.
Hayley had previously set up a GoFundMe page to help support her ailing brother and his family.
The young father was forced to bring his wedding with his partner Claire forward due to the condition triggering.
Hayley worked as a television news reporter for several years after she began her career with regional broadcaster WIN in 2011 according to her LinkedIn page.
She worked at WIN for three years before she joined the Nine Network in 2014.
Hayley ended her time at Nine a few years later and now works as a media advisor.
According to the National Institute of Health, FFI is a very rare and fatal neurodegenerative disease that is caused by a mutation of the prion protein (PRNP) gene.
Some of the major signs of the disease include aggressive progressive insomnia as well as cognitive disturbances.
Problems in maintaining balance and endocrine dysfunctions are some of the other major symptoms that patients experience.