‘Curse stops with us’: Sad update after Brisbane dad’s rare diagnosis

A Brisbane father has died after being diagnosed with an extremely rare and incurable disease that he dubbed the family “curse”.

Lachlan Webb was diagnosed with the incurable genetic disease fatal familial insomnia (FII) in 2023, a day after he and his wife Claire celebrated their son Morrison’s first birthday.

FII is an incredibly rare prion protein gene mutation that has plagued Mr Webb’s family for generations, taking the life of his mother, two uncles and his grandmother.

The mutation attacks the sleep cortex of the brain, making sleep almost impossible and causing major damage to the body.

There are only 50-70 families in the world who have the disease, making it one of the rarest in the world.

A little more than a year after his diagnosis, Mr Webb died on November 5, two weeks after his 37th birthday. He was surrounded by his closest friends and family.

His sister Hayley shared the heartbreaking update on the family’s GoFundMe campaign.

“We cradled him,” she said. “Told him how much he was loved. How proud he made us. What an incredible legacy he left. How much his life mattered.”

Hayley is also a genetic carrier of the disease; both she and her brother used IVF to conceive their children to put an end to FII.

“The family curse stops with us,” she told Yahoo News in 2023.

Speaking to Today on Thursday morning, Mr Webb’s wife Claire said she and her husband were “best mates our whole life”, and the “thought of not having (Lachlan) around anymore is just too much to bear”.

“Everybody is dying,” she said. “None of us are going to make it out of here alive, so you have to enjoy each day. I don’t think it was really until Lachlan’s diagnosis that I really like realised how precious time is.”