Hayley Webb and her brother Lachlan inherited a terrifying illness which will stop the siblings from ever going to sleep again, eventually killing them.
The former Channel Nine reporter and her brother spent their entire lives with the rare disease Fatal Familial Insomnia (FFI) lying dormant in their bodies.
Now, Hayley, 37, has announced tragic news, revealing the disease has ‘triggered’ in Lachlan and left him with six months to live, reported The Courier Mail on Monday.
Starting a GoFundMe to help support her ailing brother and his family, she revealed she has already lost her mother Narelle, two uncles, an aunty and a grandmother to the disease.
‘When Lachlan was diagnosed as having triggered in April – a day after his son’s first birthday – at the age of 35, it was just our absolute worst nightmare,’ Hayley said.
Hayley Webb, 37, (pictured) and her brother Lachlan, 35, inherited a terrifying illness which will stop the siblings from ever going to sleep again, eventually killing them
‘We just couldn’t believe that it has struck so early,’ she continued, before revealing FFI usually triggered much later in life for her family members.
Tragically, Lachlan was forced to bring his wedding with partner Claire forward.
On the Go Fund Me page, Hayley said: ‘Lach has been experiencing aggressive symptoms for the past six months, which have progressively been getting worse.’
The former Channel Nine reporter and her brother (left) spent their entire lives with the rare disease Fatal Familial Insomnia (FFI) lying dormant in their bodies
Now, Hayley has announced tragic news, revealing the disease has ‘triggered’ in Lachlan and left him with six months to live, reported The Courier Mail on Monday. Pictured with his wife Claire and their son Morrison
She continued: ‘He is now wheelchair-bound, experiencing loss of eyesight, physical co-ordination, confusion, memory loss and is losing his ability to speak.’
According to the National Institute of Health: ‘FFI is a very rare and fatal neurodegenerative prion disease caused by a mutation of the prion protein (PRNP) gene.
‘Hallmarks of the disease include aggressively progressive insomnia, as well as cognitive disturbances including deficits in short-term memory and attention, balance problems, and endocrine dysfunction.’
Starting a GoFundMe to help support her ailing brother and his family, Hayley said her brother ‘is now wheelchair-bound, experiencing loss of eyesight, physical co-ordination, confusion, memory loss and is losing his ability to speak’
Tragically, Lachlan was forced to bring his wedding with partner Claire forward before his predicted death in the coming months
The disease is currently incurable and has an average duration of 18 months, ultimately leading to death.
With her brother’s health quickly failing him so early in life, Hayley now fears her own disease will trigger early, taking her from the world and her family.
‘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,’ she said.
‘I’ve got a three-and-a-half year-old and a baby on the way who I desperately want to see grow up.’
With her brother’s health quickly failing him so early in life, Hayley now fears her own disease will trigger early, taking her from the world and her family
The disease is currently incurable and has an average duration of 18 months, ultimately leading to death
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