There’s a photo of Dr Justin Yerbury, aged around five years old, playing dress-ups with his little sister Naomi.
The pair has remained close, as tragedy has struck their family time and again. They’ve lost their mother Pauline, their sister Sarah and other family members to a cruel disease – one with neither cure nor any effective treatment options.
One that goes by the name of motor neurone disease, or simply MND. A baffling degenerative disease in which sufferers progressively lose the use of their limbs, and ability to speak, swallow and breathe, while their mind and senses usually remain intact. They effectively become ‘locked in’.
It’s random in nine out of 10 cases, but 50 per cent of Justin and Naomi’s family have the gene that leads to the disease. That family history spurred the young Wollongong man to give up his pro-basketball career, playing for the Illawarra Hawks, and delve into the field of molecular biology to dedicate his career to unlocking the key to MND.
He and his sister have taken tests to see if they have the faulty gene – Dr Yerbury just a few years ago. Naomi was given the all-clear; he was not.
Now, as the disease slowly paralyses him – he can only move his head, face, eyes and left foot – his sister Naomi Cocksedge looks back on that treasured childhood photograph.
“I always go back to that photo of us as children wearing dress-up, Justin as batman, because he is and has always been my superhero,” she said last Friday, as her brother readied for another operation at Sydney’s Macquarie University Hospital.
“MND is something you wouldn’t wish on your worst enemy. It takes everything from you, you’re left with your mind, you’re just in a shell. It’s devastating.
“Justin is still fighting each day, he’s never giving up. I just can’t understand how he can lay there and do this and still have the passion and the fight and want to help others.
“He’s just such an amazing person, he’s the kindest human I know.”
There’s nothing more Dr Yerbury wants to do than get back to his wife and two daughters, back to his life’s work to help others with the deadly diagnosis. Even as he replies to the Mercury’s questions using his computer with eye recognition technology on Friday, his thoughts are not on his own plight.
“Many people are diagnosed with MND and must cope with the prognosis,” he said. “I have, with the help of my dedicated team, hardworking colleagues and support from my family, continued to work towards a future treatment for this disease.”
The symptoms of MND started to show in May 2016. “My first symptoms were in my right hand. It has since spread to all limbs and to the muscles for breathing,” he said.
Living with the knowledge she’s been spared is bittersweet for Ms Cocksedge.
“When Justin found out he carried the gene some years ago he was left waiting and wondering. It’s almost like a ticking time bomb – especially when you see other family members being diagnosed and dying,” she said.
Dr Yerbury, 44, has spent the last decade studying the disease which affects around 2000 Australians, alongside his team at the Illawarra Health and Medical Research Institute (IHMRI) based at the University of Wollongong.
Much of the research focuses on determining the cause of the disorder, in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow begin to degenerate and die. It’s vital research, and it’s led to new insights into the disease – and to the development of potential therapeutics which are currently in the test phase.
“One of the biggest questions in the field of MND is trying to understand why, out of all the billions of neurons in the brain, why motor neurones die in the case of MND,” Dr Yerbury told the Mercury last May. “If we understand why they die that will help us preserve them, and that will hopefully lead to an effective treatment to slow the progression of the disease down.”
Last April Dr Yerbury met with world-famous British physicist and cosmologist Professor Stephen Hawking, who died on March 14 at 76 after living with MND for over 50 years. Movingly, Prof Hawking provides the introduction to an episode of ABC’s Australian Story on Dr Yerbury’s life, and quest for a cure, that will air at 8pm on Monday night.
The episode – filmed several weeks ago before more recent declines in his condition – hears from Dr Yerbury, from his wife Rachel, and his sister Naomi. For Dr Yerbury, his wife of 23 years is his rock. “I have much support from my family and friends but my amazing wife Rachel is the strongest person I know and I couldn’t do this without her,” he said.
Ms Cocksedge has helped her brother raise awareness, and funds, for MND. A firefighter, she climbs the Sydney Tower for the Firies Climb for MND each year.
“So many diseases out there at least have some treatment options, at least there’s a chance. With MND there isn’t a chance,” she said.
“With so much loss and heartache and family devastation in our story, what we want to get across is Justin’s dedication to finding a cure.
“We want to focus on his research and where that can possibly go in the future, and the fact that we do need more funding to find that cure.”
See Dr Yerbury’s story on Australian Story, ABC, tonight at 8pm.