A Wollongong family's lives were turned upside down when their matriarch was diagnosed with a terminal illness, now they join together to help other families.
Marie Young was diagnosed with motor neurone disease (MND) at the end of 2020 just as she hit remission from breast cancer.
Some of her MND symptoms were at first thought to be due to a "hangover effect" from radiation and chemotherapy.
"We noticed some changes in mum's personality, speech was slurring [and] she was really tired," her daughter Nicole Taylor said.
Since then the 71-year-old has had trouble swallowing and had a peg feeding tube inserted. She is also non-verbal and communicates through body language and a tablet.
The disease causes the nerve cells (neurones) "controlling the muscles that enable us to move, speak, breathe and swallow' to undergo degeneration and die", MND NSW explains on its website.
The close-knit family have been rocked by the disease, but are hoping to help raise awareness and help other families.
The family will be participating in the annual fundraiser Walk to D'Feet Illawarra on Sunday, May 7.
The walk raises funds for MND NSW to support people living with motor neurone disease and research. Two Australians are diagnosed with MND every day, and there is currently no cure.
The 5km walk, which is wheelchair and stroller-friendly, starts 10am from Bulli Beach Reserve.
Mrs Young's family is the leading fundraising team for the Illawarra. Their team has raised nearly $23,000 so far.
For Mrs Taylor, it's the everyday things she misses the most since her mum was diagnosed: "the daily phone chats, sounding the day out".
"Mum would ring me every morning and we'd have a chat [on my drive] all the way to work ... I miss just being able to pick up the phone," Mrs Taylor said.
"You actually don't realise how much of your social life and life revolves around food. Every family celebration, you bring out the food."
Money raised from the walk will support people diagnosed with MND who do not qualify for National Disability Insurance Scheme NDIS.
"They don't qualify for NDIS if they've been diagnosed at 65 and over so we provide all of their equipment free of charge," Mrs Nielsen said.
She said MND NSW still supports those that qualify for NDIS by providing education and support groups, home visits, and assistance navigating the health system.
"It means that they really don't have the time to sit on those lists and wait. From diagnosis to death with motor neurone [disease] is averaging 27 months," she said.
"So we have no cause and no cure and what we're about is trying to support those people on that journey to make their quality of life as best as we can for them during that journey."
Mrs Young's family echoes that the costs add up for families, pointing to six machines and a wheelchair as just the beginning of the health costs.
It will be the third year Mrs Young will don her crown and join family and friends to raise money for MND NSW.
"We're a little bit further along the journey, so we actually find that we're now helping people that are newly diagnosed and new families with it," her daughter Mrs Taylor adds.
Their team of over 70 people will be raising money for people who are not in the financial position to pay for the many health costs the disease causes.
"We as a family like to count our blessings and together we're paying it forward and let's never give up hope for a cure."
For more details: walktodfeet.org.au/event/illawarra23/home
An Illawarra MND Support Group meeting will be held at Dapto Ribbonwood Centre on May 17.
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Marlene Even
Journalist at the Illawarra Mercury. Previously a radio and podcast host at 2SER Radio.
Journalist at the Illawarra Mercury. Previously a radio and podcast host at 2SER Radio.
