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Young Australian dad diagnosed with fatal familial insomnia slowly dying from hereditary condition

Years before his diagnosis, Lachlan Webb knew that an incurable and unpreventable hereditary condition could slowly suck the life from him.

But as the father of a one-year-old boy, he hoped he had more time. He hoped he could see his son grow up.

Instead, with the “worst-case scenario” unfolding, the Brisbane man’s tragedy-stricken family isn’t sure he’ll be around for Christmas.

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“To see him deteriorate and lose independence has just been horrific,” said his sister Hayley Webb.

The Webb family is in rare company — but not for the right reasons.

In the 1970s, Lachlan’s uncle died in his early 20s from unknown causes.

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“At the time, my family had no idea what was happening to him,” Hayley told 7NEWS.com.au.

“They just had no explanation for it.”

When the siblings’ grandmother died in similar circumstances in her 60s in 1994, it was discovered the family was found to carry the gene causing fatal familial insomnia (FFI).

The rare condition is as horrific as it sounds. Victims lose the ability to have proper sleep.

Hayley and Lachlan’s mother died in 2012, six months after being diagnosed as FFI-triggered.

“About a month at the end of that was her in a vegetative state,” said Hayley.

“The month before that was her hallucinating 24/7.”

Lachlan Webb uses a wheelchair as he fights the effects of fatal familial insomnia. Credit: Supplied

She was in her 60s. Lachlan is only 35.

His initial symptoms were memory fog, dizziness and weight loss. He was also having “night wakings”, Hayley says.

Perhaps optimistically, it was hoped those symptoms could have a less sinister explanation.

“He had a baby and was under a lot of stress at work. He had things going on in his life that could explain these symptoms away,” Hayley said.

“Night wakings aren’t unusual when you have a baby. Weight loss can happen when you’re stressed at work.

“We were holding on to hope that it wasn’t FFI.

“Unfortunately, we did receive the diagnosis earlier this year. He was diagnosed the day after his son’s first birthday.”

Lachlan is a young husband and father to a one-year-old boy. Credit: Supplied

Lachlan’s decline since his diagnosis in April has been “rapid”, according to Hayley.

He uses a wheelchair, having lost his balance and coordination, and he suffers memory loss.

“He feels very foggy a lot of the time,” Hayley said.

“Most recently, he’s been losing his ability to speak. It’s been very difficult.”

But his decline has been nowhere near as abrupt as that of other family members.

“His mental symptoms have been much slower and quite different to our other relatives’ deterioration,” said Hayley.

“He has surprised us all with his resilience.

“He hasn’t had any hallucinations at this point, which is in stark contrast to our other family members at this point.

“When he was first diagnosed as triggered back in April, we didn’t hold much hope that he would see September.”

Lachlan Webb and his sister Hayley. Credit: Supplied

Fatal familial insomnia, according to the United States’ National Organization for Rare Disorders (NORD), is caused by abnormalities in the prion protein which become “toxic to the body”.

The abnormal or “misfolded” prion proteins live “primarily” in the thalamus, “which is a structure deep within the brain that helps to regulate many functions of the body including sleep, appetite and body temperature”, NORD says.

Unlike its name suggests, FFI doesn’t stop Lachlan from sleeping. But it does stop him from getting the sleep he needs to live.

“Lachlan still goes to bed every night. He still falls asleep — albeit for short periods of time,” said Hayley.

“The problem isn’t so much him falling asleep, as it is reaching the restorative stages of sleep.

“He will go to bed at night. He will go to sleep for four hours.

“But he never reaches a stage of sleep that is reparative for the brain and body.”

Lachlan’s family don’t know how much longer he has left. Credit: Supplied

Lachlan and Hayley have both undergone IVF to have their children, in a bid to stop passing FFI down.

They had known they had FFI in their family most of their lives, but it wasn’t until their mum died that they decided they wanted to get tested to see if they were carrying the deadly genes.

When they received the diagnosis, they were in their 20s, enabling them to “investigate avenues not to pass the gene onto our own children”, said Hayley.

It’s not known how much longer Lachlan will live, but the family is “praying he’s able to see Christmas”.

“We’re just so grateful for every extra minute, every extra hour, every extra day we have,” Hayley said.

As a mum of a three-year-old, with a second son due in weeks, Hayley admits she lives her life in fear.

‘Frankly terrifying’

“Before this year, we put it to the back of our heads because we thought we had time,” she said.

“We knew there was no cure, we knew there was no prevention, we knew there was nothing we could do to stop it.

“So we focused on the things we could do, that is raise awareness, raise money for research and do IVF, so we never pass it down to our children and the buck would stop with us. That’s what we did.

“Then this year hit us like a big punch in the face and we realised that time isn’t guaranteed.

“And that is frankly f****** terrifying. That’s really scary.

“I’ve got a three-and-a-half-year-old and am weeks away from having my second boy.

“I desperately want to see them grow up and be there for them.”

A GoFundMe has been set up to support Lachlan and his young family.

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