Like everyone on her side of her family, Jessica — whose identity has been withheld to protect her privacy — has been diagnosed with Huntington's disease (HD).
Her mother, father, siblings, grandparents, uncles, and aunties all have the rare, genetic condition, which causes a breakdown of nerve cells in the brain.
HD is described as like having motor neurone disease, Parkinson's and Alzheimer's, all at the same time.
Symptoms often develop in a person's 30s or 40s and a life expectancy of up to 65 years is common.
There is currently no cure or treatment for the illness, which affects about 2,000 Australians.
Diagnosed at 22
Jessica, who lives in central-west New South Wales, was diagnosed at 22 — six years after she found out her mother had the condition.
She has watched her mother battle depression and alcoholism and require 24-hour clinical care.
"At this stage I am probably struggling with it more because I'm watching her die slowly," Jessica says.
While Jessica, 35, is not yet displaying symptoms, anyone who has the Huntington's gene will be affected.
If a parent has the Huntington's gene, there is a 50 per cent chance their child will inherit the condition.
'We didn't have that kind of money'
When Jessica was trying for children a decade ago, a special form of IVF that selects chromosomally healthy embryos, maximising the chance of a healthy baby, would have cost her up to $100,000.
Since then the price has fallen to $10,000 thanks to advancements in medical research and increased support from Medicare.
People with Huntington's are eligible for the National Disability Insurance Scheme and many rely on Centrelink for an income or, in Jessica's case, are working for as long as the disease will allow.
This can make it challenging to afford the IVF treatment to prevent the Huntington's gene from being passed on.
"We didn't have that kind of money, and I just thought how stupid is our government, they could help people in my situation," Jessica says.
"I am looking at the amount of care and money that is going into my mum at the moment, we are talking hundreds of thousands of dollars a year for her support."
Jessica decided to go ahead with having children without IVF, a decision that was criticised by medical professionals they had consulted.
"It was hard because we were told when your child has this disease it will be your fault," she says.
The earliest the degenerative gene can be detected through genetic testing is when someone reaches the age of 18.
Lack of support in the regions
The Huntington's disease outreach service at Westmead Hospital in Sydney is the only medical centre that provides specialist care for patients with the condition.
Living in central-west New South Wales, Jessica says getting access to the support she needs is almost impossible.
"I used to have a counsellor come out to talk to me, just to give me someone to lean on, to talk to, but we lost the funding for that," she says.
"We don't have that special person that comes out to these rural towns anymore.
"It would mean the world to me if I had that support person that could come out and visit us."
Orange resident Rachael Brooking, 48, founded not-for-profit HD Awareness Central West after 10 of her family members were diagnosed with the disease.
She says families do not receive the care they need.
"They are not just caring for one family member, they are caring for two, three, four or five over a couple of generations and it is really quite daunting and traumatic," Ms Brooking says.
'Trauma and isolation'
Speaking in federal parliament last week, the Independent Member for Calare Andrew Gee said the condition would have a growing impact on the health system.
"As it is a hereditary condition, approximately 9,000 people are at risk of developing the disease," he said.
"For over 75 per cent of people with HD in Australia the only option is residential aged care, even though most will be entering such care when they are considerably younger than the threshold age of 65."
Mr Gee said governments had failed to provide the necessary funding in the past.
"HD is devastating for patients, their families and loved ones," he said.
"The lack of education and support has added to the trauma and isolation."
Family guilt
Ms Brooking tested negative to the Huntington's gene at the age of 25.
While it was a relief for her, she struggled to cope when her brother tested positive.
"It does come with a lot of survivor guilt, my brother wasn't so lucky," Ms Brooking says.
"He is 44 years old and living in 24-hour care. Our mum was 50 when she passed away.
"Starting HD Awareness was actually my way of coping with the fact I didn't get Huntington's because you are essentially looking at what your life could be."
Ms Brooking says watching a family member experience the symptoms of the disease can be incredibly challenging.
"I was Mum's carer from the age of 15 and at that point we had no idea what was wrong, so it was an extremely volatile and traumatic experience," she says.
"You become quite isolated from everybody because you don't know what is going on and the symptoms that they portray can be quite confronting."
