After a lifetime of health issues, Shirley was diagnosed with motor neurone disease (MND) by Professor of Neurology, Dominic Rowe at the MND Research Centre at Macquarie University Hospital.
“I was teaching one afternoon and received a call at lunchtime from dad. He said Professor Rowe would like to meet. I’ll never forget meeting him.
“I can still see him, and I can still picture when we were seated and he shared the diagnosis and clearly there wasn’t much hope,” Meryn remembers.
Prior to her MND diagnosis, Shirley was already dependent on dialysis from 1988, due to myeloma-induced complete renal failure.
While the dialysis was keeping her alive, when she was diagnosed with MND and experienced the ensuing deterioration, Shirley knew that quality of life was not the same as quantity of life.
Bulley family (left to right): John, Andrew, Shirley, and Meryn.
With time comes understanding
“Looking back, I was so young. I was encouraging her to keep going. I didn’t have the life skills back then, and I wasn’t mature enough to fully support her,” reflects Meryn.
“That was just my way of wanting to hang on to her, but looking back, it was a brave decision to make. With dialysis she could have had several more years, but the MND was really taking hold.”
Thirty-three years on, Meryn has lived more life and views her mother’s passing differently. “She was always thoughtful and attending to her patients as a medical secretary. It really said everything about her. She loved people”, Meryn remembers fondly.
While Shirley was not always in good health and especially after her passing, Meryn’s father John was a source of strength for the whole family, playing the role of two parents. His effort was proof that MND doesn’t just rob people of their mobility, but also of the role they play in the lives of their loved ones.
“Dad was still fully independent and volunteering for local causes until he passed away at the age of 96 in 2023,” explains Meryn. At the time, Meryn’s brother Andrew suggested mourners should donate to the MND Research Centre, in lieu of flowers.
John and Meryn Bulley.
In memory of those who lived with the impact of MND
Despite the devastating news, and the incredibly short time between her mother’s diagnosis in February and her passing four months later, Meryn has never forgotten the service that cared for her mother and has found a way to give back by leaving a bequest in her will.
“I just always knew I’d like to do something to support the service in some way. So, at the start of the year, I reached out to Macquarie.”
In May 2025, Meryn met Professor Rowe 33 years after he cared for Shirley. After all those years, Professor Rowe was as she remembered him when they first met.
“His passion and drive to find a cure for MND was still very evident and I remember that back in 1993. It was such a privilege to meet him, and he gave up some precious time, but I was just so thankful.
“He remembered Mum. I think it was a combination of myeloma, kidney failure, and MND. I was quite touched that he remembered her. It was very emotional.”
When asked why she is leaving a bequest in her will to the MND Research Centre, Meryn highlighted the growing need for treatment and a cure.
“MND is such a wicked disease. We have to do everything we can to help support these brilliant minds like Professor Rowe and his colleagues. Clearly, it’s close to my heart and I do believe there will be a cure one day, or at least a way to slow down the progression.”
Meryn Bulley and Professor Dominic Rowe at the 2026 MND Gala.
While her bequest is to support the service that cared for her mother, Meryn is donating this bequest to honour both her mother and father, and their legacy; to honour all the other moments that made up her life:
The weekly Sunday night dinners, the unwavering love between her mum and dad, family laughter over board games during school holidays, and birthdays celebrated with a kind of care that made everyone feel special.
Honouring Shirley and John’s legacy is the true gift. Being part of that is a privilege for The MND Research Centre.
Learn more about the work of the MND Research Centre, how they are developing treatments that can extend and improve MND patients’ lives, and finding a cure for this devastating disease.
