“Our absolute worst nightmare”: Nine reporter reveals devastating family diagnosis
<p dir="ltr">Channel Nine reporter Hayley Webb has shared how she and her brother Lachlan have been struck down with a terrifying terminal illness. </p>
<p dir="ltr">The siblings have spent their entire lives living with Fatal Familial Insomnia (FFI) lying dormant in their bodies. </p>
<p dir="ltr">The devastating illness, which has already claimed the lives of three aunts and uncles as well as their mother, will eventually leave the siblings unable to ever fall asleep again. </p>
<p dir="ltr">From there, symptoms progress to, but are not limited to, the inability to walk, loss of sight and speech and an eventual total shutdown of the body's ability to keep itself alive.</p>
<p dir="ltr">Hayley and Lachie first discovered they had the gene in 2016, and decided to take part in a study of the disease in California to end the generational curse of the genetic disorder. </p>
<p dir="ltr">But tragically, earlier this year, Lachlan began having symptoms at just 35 years old, and discovered his condition had rapidly worsened.</p>
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<p dir="ltr">"The months leading up to it, I thought something was wrong - my memory was getting worse and I just knew something was different," Lachie told Karl Stefanovic on <em>Today</em>.</p>
<p dir="ltr">"I put it off for a month or two just in case it was something else, but once I got tested I realised my fears were confirmed."</p>
<p dir="ltr">Lachlan was diagnosed in April, just one day after his son's first birthday, which Hayley described as “just our absolute worst nightmare”. </p>
<p dir="ltr">The diagnosis triggered the disease's rapid shutdown of the mind and body, now Lachie struggles to sleep, requires a wheelchair to get around and his speech is starting to go as well.</p>
<p dir="ltr">"Lach and I have always been so close - best mates our whole life," Hayley said. "The thought of not having him around is just too much to bear."</p>
<p dir="ltr">Sitting in front of the pair, Hayley's heartbreaking admission brought Karl to tears.</p>
<p dir="ltr">"I don't think I've ever done a story like this, and certainly never met anybody like you two in my life," the Today host said.</p>
<p dir="ltr">With Lachie being officially diagnosed with the disease so young, Hayley has started to wonder about her own mortality. </p>
<p dir="ltr">The disease has an average duration of 18 months, ultimately leading to death, making the siblings worry about their families and their futures. </p>
<p dir="ltr">“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.</p>
<p dir="ltr">“I've got a three-and-a-half year-old and a baby on the way who I desperately want to see grow up.”</p>
<p dir="ltr">While no doctor or test can predict how long Lachie has - his wife Claire and Hayley, who is expecting, have done something extraordinary, taking their family's fate into their own hands.</p>
<p dir="ltr">"We both underwent IVF and through that process we were able to conceive children who won't have the gene, so the family curse stops here," Hayley said.</p>
<p dir="ltr"><em>Image credits: Today</em></p>
