'Family curse' leaves Aussie dad, 36, with 'weeks' to live
'Never in a million years' did Lachlan Webb and his sister think their fatal gene mutation would 'trigger' so early.
Just one day after celebrating his child’s first birthday, Lachlan Webb received the devastating news that as his son’s life was beginning, his own would soon come to an end.
The Brisbane dad became the latest victim of his family’s “curse” — a rare and incurable disease — that has seen his, along with other loved ones, bodies deteriorate over a matter of months. The illness has left Lachlan wheelchair-bound with poor eyesight, difficulty speaking and memory loss.
Lachlan, who turns 36 on Thursday, is just one of dozens of people in the world to be diagnosed with an incredibly rare prion protein gene mutation that causes Fatal Familial Insomnia. The incurable disease makes “REM sleep physically impossible”, his sister Hayley Webb, 37, who also inherited the mutation from their mum, told Yahoo News Australia.
“You can live completely unaffected up until the protein triggers and once it triggers your body starts mass producing mutated proteins,” she explained. “Without restorative sleep your body can’t regenerate and starts shutting down and over the course of six months you deteriorate until you die.”
Lachlan was diagnosed as “triggered” in April after initially experiencing “weird” symptoms at the end of last year.
'Our worst nightmare'
While they have always known there was a risk the disease could be “triggered” at some point in their life, with doctors labelling the “danger zone” as between the ages of 40 and 60, “never in a million years” did the siblings think it would strike so early.
Hayley, who is due to give birth to her second son in a few weeks, said her brother had started to complain of waking in the night and feeling mentally foggy as well as losing 12kgs.
“I was clinging desperately onto hope that the symptoms could be explained through work stress and having a newborn,” she said. “But it very quickly became evident that our worst nightmare was happening.”
Fatal Familial Insomnia claims several family members
Lachlan, who married his partner of nine years, Claire, in an quickly planned ceremony in June, has since been in a “very steep decline”.
Having lost their mum at the age of 61, two uncles, one aunt and their grandmother to FFI, the Aussie dad has “surprised” family members with how “resilient” he has has been.
“Most people didn’t make it to the six-month mark, or if they had they were in a vegetative state,” Hayley told Yahoo. “He’s still able to communicate with us and hasn’t experienced any delusions. On the flip side is that there is only going to be one outcome and at the end of the day he is dying and it is horrific.”
There are reportedly only 50 to 70 families in the world that have been diagnosed with the disease.
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Hayley has started her maternity leave early to spend more time with her brother, who is making the most of the “weeks, maybe months” he has left with his wife Claire and their 18-month-old son Morrison, who is thankfully not a carrier of the gene mutation.
Hayley said she and her brother both used IVF to conceive their children to make sure “the family curse stops with us”.
As they prepare for the unimaginable, a GoFundMe has been created to help raise awareness and money for FFI research. Fundraising efforts will also help Claire and Morrison as they grieve and pay for Lachlan’s medical bills.
As for now, Hayley said she is just “grateful for every extra minute” she gets with her “life-long” best friend.
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