BGS Old Boy '05 Lachlan Webb and his sister, Brisbane Girls Grammar School Old Girl '03 Hayley, have inherited Fatal Familial Insomnia (FFI) and have no idea when it will strike.
With no treatment or cure, the extremely rare genetic disease steals your sleep, your motor skills, your mind, and ultimately your life. It has already claimed the lives of their mother, grandmother, aunt, and uncle.
The pair featured on an episode of 60 Minutes earlier this year, telling their story.
Watch it here.
You can help by donating to
Prion Alliance, with all funds going to assist researchers who have dedicated their lives to curing FFI.
Click here to donate.