A couple of weeks later, Simon received lifesaving neurosurgery at the Macquarie University Hospital.

Simon Ball lives with a complex neurological condition, first diagnosed in childhood when he began experiencing severe headaches. To find the cause, he became one of the first people in the country to undergo a computed tomography (CT) scan in 1976, when he was just eight years old.

The scan showed a large abscess on his brain, requiring urgent surgery that resulted in the removal of the right frontal lobe. The surgery saved his life but left him with ongoing epilepsy.

Simon and Paul first met and fell in love in 2000 and moved in together the following year. After almost 20 years together, the pair were finally married in May 2018. During this time, Simon’s epilepsy was well controlled, resulting in only two seizures.

In the second half of 2019, shortly after their first wedding anniversary, Simon’s condition suddenly began to deteriorate. Manifesting first as struggling to walk in a straight line, his balance became steadily worse, and by December his other senses were also affected.

“It began with not being able to taste what he was eating for breakfast and progressed to the loss of his sense of smell. It was almost as if his smell and taste were being switched on and off from day to day,” Paul says. In the end, it was the smoke that blanketed Sydney during the devastating 2020 bushfires that raised alarm bells for the pair.

“On the night of 19 January, the smell of the bushfire smoke was filling our bedroom. I called out that I needed to close the window, but Simon couldn’t smell it at all. He thought I was imagining it and rather grumpily told me to suit myself.

“I knew then something was really wrong.”

By the next morning, Simon could not walk at all without support, and his senses of balance, smell and taste were completely gone.

The pair made it to their GP, who thought Simon may have suffered a stroke and called an ambulance to take him to Royal North Shore Hospital’s emergency department.

Tests revealed Simon was suffering from an extremely rare condition: swelling to his brain’s fourth ventricle, which controls balance, smell and taste.

His neurosurgeon knew of only a handful of other cases, and only one specialist in Sydney who had experience in performing the operation to relieve the swelling – Professor Marcus Stoodley, Head of Neurosurgery at Macquarie University Hospital (MUH).

Simon was transferred to MUH’s Neurological Ward on 28 January. Professor Stoodley prioritised Simon’s case and performed lifesaving neurosurgery on his swollen fourth ventricle just one week later. The groundbreaking operation was robotically assisted and took just four hours.

When Paul got the call that Simon was awake and asking for him, he rushed to Recovery.

“When I saw Simon, I took his hand and burst into tears of relief that he was alive, and he recognised and remembered me,” he says.

Simon’s sense of taste and smell were restored almost instantly, and his balance was back within a week, allowing him to walk in straight lines again.

It’s been a few years since Simon’s operation and the pair remain committed to each other, and grateful for each passing year together.

“We had only celebrated one wedding anniversary when the surgery took place, and we’ve now celebrated our sixth, and are looking forward to the seventh next year,” says Paul.

As a gesture of thanks, the couple have decided to leave a bequest in their will to support Macquarie University’s research in neurology, neurosurgery and neuroscience.

“Simon says he would never have made it through all this without me there to support him, but neither of us would have made it without Professor Stoodley,” Paul says.

“We realise that without his surgical skill, it’s unlikely Simon would still be with us today.

“We believe that leaving a bequest to support research is the ultimate way to show our appreciation to Professor Stoodley, beyond what words can express.”