Standing on Stephen Hawking’s doorstep, Australian scientist Justin Yerbury was nervous. He had been warned that meeting the famous physicist could be confronting and wondered what they would talk about.
He needn’t have worried. For two hours, the pair talked about motor neurone disease, the condition they shared. Hawking explained how he had lived with the disease for an extraordinary 55 years and wanted to know about Justin’s ground-breaking research into it.
Within a year, motor neurone disease had taken Hawking’s life and left Justin facing one of the most difficult decisions of his life.
I first met Justin in October last year, at his home in the hills outside Wollongong. As we sat around a table on his large wooden deck, Justin and his wife Rachel, both 43, told me their story.
Justin’s words were punctuated by sharp, irregular intakes of breath and he stopped from time to time to drink from a straw Rachel held to his lips. It was only when Justin was helped to his feet, unfolding his 195cm frame from the chair, that I realised how imposing he must have been as a professional basketballer.
But that was a long time ago. Before his family members began dying from motor neurone disease. Before Justin turned his back on sport to study science so he could understand the disease. And before he, too, was diagnosed, just as his research into MND was gaining world-wide attention.
‘The worst possible disease’
Motor neurone disease is a fatal condition that occurs when cells in the brain and spinal cord responsible for movement — motor neurones — become sick and die. In Australia, between 600 and 700 people die from the disease each year.
“If you were to design the worst possible disease it would be motor neurone disease,” Justin’s doctor, Professor Dominic Rowe, said. “Your muscles don’t work, you can’t move, you can’t swallow, you can’t talk, eventually you can’t breathe and you die.”
Most cases of MND occur randomly but 10 per cent of cases are inherited, as in Justin’s family. Since the mid ’90s, when they realised anyone on Justin’s mother’s side of the family could carry the gene for MND, they have lived under a shadow.
“It became like a ticking time bomb,” said Justin’s sister, Naomi Cocksedge. “Who is it going to go off next to next?”
At my first meeting with Justin he could stand with assistance but had almost lost the use of his arms and was finding it hard to talk for long periods of time. I was told that if I wanted to interview him it would need to be right away.
Filming again with Justin a little over a month later, his deterioration was shocking. He was now in a wheelchair and required frequent ventilation to breathe. The mask was tight, leaving painful-looking marks on his face.
Justin, Rachel and his two daughters, 22-year-old Talia and 19-year-old Maddison, gathered around the computer in their living room, laughing as they showed me videos from the many overseas trips they have taken in the years since genetic testing revealed Justin carried the gene for MND.
There’s Justin swimming in Thailand, rowing a bamboo basket boat in Vietnam, on a longboard in Tonga. He looks fit and vital.
The unlikely scientist
No one who knew Justin at school would have predicted he’d one day be an internationally recognised scientist.
“I did Year 12 physics poorly,” Justin said laughing. “I was not much of a scientist at school.”
After school he did a Bachelor of Commerce but his heart wasn’t in it. His only real interest was basketball and by his early 20s he was playing in the NBL for the Illawarra Hawks.
As family members began to die from MND — including, in one six-week period, his mother, grandmother and an aunt — he turned to medical journals on the internet for information but it was “like reading a foreign language”.
So in a remarkable career move, he turned his back on professional basketball and enrolled in an undergraduate science degree.
His family situation was a great motivator and he excelled, graduating with first-class honours and embarking on a PhD.
As Justin neared the end of his PhD, his younger sister Sarah was diagnosed with MND, dying not long afterwards. She was just 26.
“That was one of the hardest ones to take,” Justin said. “It was devastating to know that I was working towards something and I couldn’t do anything.”
Justin’s mission to wipe MND ‘off the planet’
Driven by that tragedy, he finished his PhD and took up a postdoctoral research fellowship at the University of Wollongong, eventually running his own laboratory and collaborating with scientists in Britain and Canada.
He was making a name for himself internationally with his work on the role of malfunctioning proteins in the spread of the disease.
In April 2016 he was in the US to deliver a lecture when he noticed that his thumb didn’t feel right. Not one to make a fuss, he kept it to himself but deep down he suspected the disease had finally struck.
On his return he made an appointment to see his doctor, who confirmed he had developed the disease.
“I was shocked,” Rachel said. “It seems ridiculous to say that I hadn’t seen it coming but we’d always been so determined he wasn’t going to get the disease.”
The family decided to make the most of the time left, continuing to bushwalk and mountain bike and taking holidays to Europe, Africa and Fiji.
“We try to squeeze every moment out of every day,” Justin said, “We’ve left nothing to the what-ifs.”
Justin continued his research, determined to find a treatment for the disease.
“That’s what really drives me,” he said.
“It’s not the fact that I have been diagnosed with this disease — it’s trying to wipe this thing off the planet.”
But time was running out. The ventilation Justin had been using was no longer enough. If Justin wanted to prolong his life he would need to undergo complex and invasive surgery. He would be permanently connected to a ventilator, requiring 24-hour supervision and unable to speak.
The procedure is rarely done in Australia. It is hard to secure funding for home care after the operation and the patient’s quality of life is severely compromised.
But Justin wasn’t ready to die. He wanted to spend more time with his family and continue his research. He also took inspiration from his meeting with Stephen Hawking, who had the surgery in 1985.