Watching his six-month-old daughter endlessly spasming in pain drove Michael Lambert beyond the bounds of Australian drug laws.
Three years later Katelyn’s recovery has prompted an unprecedented A$33.7 million (NZ$37.29m) donation to fund research into medicinal cannabis.
The three-year-old’s grandparents made the staggering donation on Friday to scientists and the University of Sydney – the largest donation ever made to any Australian university.
It was some consolation for Barry and Joy Lambert – whose BRW rich-list credentials were powerless to ease their granddaughter’s pain.
‘When you get to the end of the road you try desperate measures’ Joy Lambert said at the University of Sydney.
‘I never imagined she would be able to go to preschool’ she said.
Katelyn’s father Michael still cries when he thinks about the day his daughter was diagnosed with Dravet Syndrome.
‘I said to the doctor ‘don’t tell my wife until you know for sure’ – because she’s never going to be all right’.
Katelyn had a one in two chance of dying before she was 18 years old and a 100 per cent chance of intellectual disability.
Some days Katelyn had more than 1000 seizures: one every 15 seconds.
‘They were terrible. She was getting electrocuted to death’ Lambert said.
The thought of her tiny body writhing under the effects of one of the most vicious forms of childhood epilepsy – propelled him to act.