Kerry lost her ex-husband to motor neurone disease in 2017.
Soon after, her daughter started showing symptoms of MND, and she too passed away from the condition in 2020.
Now her youngest son, Lincoln, has the same rare degenerative disease.
"He can't mow the lawn… he used to be able to mow the lawn," Kerry said.
"He gets short of breath very quickly. I don't quite know what's happening to his body, except it seems that it's just getting weaker and weaker."
Motor neurone disease (MND) is a degenerative disease of the central nervous system — the most common form being amyotrophic lateral sclerosis (ALS).
It affects two specific parts of the brain — the brain stem and the spinal cord. The disease attacks the body such that the person becomes weakened, it affects movement, and eventually leads to muscle paralysis.
"When these cells get very sick — the cells talking to the muscles that control your speech, swallowing, and breathing — you can't move, talk, swallow or breathe," explained Dr Dominic Rowe, professor of neurology at Macquarie University and an expert in MND.
Misdiagnosis is common
Despite the family history of motor neurone disease and the many tests Kerry's daughter Jessica took, it was still a while before she was diagnosed with MND.
"They kept saying it's stress related, it's not motor neurone disease," Kerry said.
"Even her neurologist was hopeful that it was not motor neurone disease — but it was."
Dr Rowe sees up to three new patients a week at his Macquarie University clinic.
Twenty to 30 per cent of those patients come to him after having received an alternate diagnosis from their primary physician.
Every day, at least two people are diagnosed with MND in Australia – but getting access to neurological assessment in some parts of the country is still very difficult.
For example, in Tamworth, the waitlist to see a neurologist is more than a year.
"Unfortunately, in Australia, your access to care is very much determined by your postcode and we need to remedy that," Dr Rowe said.
The lack of awareness of the disease remains an obstacle in getting proper funding and research to find a cure.
Margaret's story
Margaret Garvan was a counsellor and an educator.
Her first encounter with MND was treating a client struggling with the ramifications of the disease.
When Margaret started facing speech issues herself, she feared she had the same thing.
Margaret and Michael went to three different nose and throat specialists after Margaret had a bad episode of involuntary choking — but no one could tell them what Margaret was going through.
"The difficulty in diagnosis is often caused by a lack of recognition of the significance of the symptoms," Dr Rowe said.
According to Dr Rowe, the delay in MND diagnosis can occur because patients might downplay their symptoms – but also because sometimes GPs assume there's a more common explanation for the symptoms the patient is facing.
"I've never seen grief in someone's face like I saw in Marg's face," Michael said, recalling the day the couple found out Margaret had MND.
When Margaret was diagnosed, doctors gave her 12 to 18 months before she would start losing her voice completely.
But the process started in just three days.
"The progression of the disease is very hard to deal with," Michael said.
"You make a plan, but you soon find out you have to be very flexible."
Michael and Margaret knew they didn't have a lot of time, and all Michael wanted was to make Margaret comfortable.
Initially, Margaret was offered a base-level care package from governmental aged care services. But when her symptoms became more prominent, they applied for further support.
After a nurse came to visit and assess her situation, Margaret's care package was upgraded from 'level one' to 'level four'.
But by then, it was too late.
"The approval letter that came through for the funding to proceed was dated two days after she died," Michael said.
Path to a cure
The average life span for someone with motor neurone disease is 27 months, or just over two years.
"If we can slow the progression of motor neurone disease, theoretically by 50 per cent, we can quadruple the survival time for people with good supportive care and therapies… that's what a cure looks like," Dr Rowe said.
While there is no cure for MND, there is medication, therapy, and trials to better support patients.
IVF testing and pre-implantation genetic diagnosis can detect genetic forms of MND, and in doing so, reduce lives lost to the disease. But funding for these advanced technologies remains low.
"The disease is not incurable. It's underfunded, but not incurable. I refuse to believe that it's incurable," Dr Rowe said.
To that end, charity FightMND has harnessed sport's popularity in Australia to shine a light on the disease here, culminating in the AFL's annual Big Freeze event.
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AFL great Neale Daniher co-founded FightMND in 2014 soon after he was diagnosed with the disease, and he's been campaigning for more support for the cause ever since.
For Kerry, it is painting and coming home to a furry friend that helps her as she continues to go through the journey of supporting her son with MND.
There are days when things get difficult as she sees her son live with the condition's effects — the same disease that took two of her family members.
But she has faith that eventually there will be an effective treatment for MND.
"I really believe they will find a cure, find something to slow it down."
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2023-06-11 20:02:12Z
CBMiamh0dHBzOi8vd3d3LmFiYy5uZXQuYXUvbmV3cy8yMDIzLTA2LTEyL2xvdmVkLW9uZXMtb2YtcGVvcGxlLXdpdGgtbW5kLXNwZWFrLWFib3V0LXRoZWlyLXRyZWF0bWVudC8xMDI0NTU0NTjSAQA
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