Tributes have started flowing for Bulli woman Sharn McNeill, 37, who died peacefully at home after a long battle with a rare, aggressive form of motor neurone disease.
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The disease had caused Mrs McNeill's mobility and speech to slowly deteriorate, and on Tuesday morning the Shining4Sharn Facebook page shared the sad news.
Husband Russell McNeill said she fell asleep on Saturday and didn't wake, passing away at home in her bed, just before 6am on Sunday.
He said funeral details will be posted on the Shining4Sharn Facebook page on Wednesday..
Step-sister Belinda Down said Mrs McNeill was very proactive in raising funds and awareness.
She said Mrs McNeill did drug trials overseas that worked well and would want such trials to continue.
"She was in pain but she was always really positive," Mrs Down said.
"She was always trying to get involved in whatever she could. Anything she could get to, she would. She was a really strong woman and an inspiration to all of us".
On many occasions Mrs McNeill expressed her gratitude for the efforts of others who helped raise funds and awareness for MND.
She was always putting others first in the messages she conveyed.
In 2017, she thanked Balgownie firefighters who climbed the 98 storeys of Sydney Tower Eye in full kit to raise funds for research into the debilitating disease.
''It is efforts like this that keep me motivated to fight this challenge,'' she said at the time.
"'I hold hope that a cure will be found in my lifetime. In the meantime I will embrace life to its fullest capacity. I will continue to set goals for myself and aspire to help others worse off than me.''
MND challenged Mrs McNeill physically and mentally and the former nurse spent recent years in a wheelchair and suffered constant spasms throughout her body.
She often spoke about having been independent and capable of anything prior to her MND diagnosis.
But she tackled every challenge head on, and set some extra ones for herself.
Such as pushing herself to achieve her dream of completing an ironman event in 2014 a year after being diagnosed with MND.
The mental toughness she developed to complete the event helped her cope better with the degenerative condition.
On hearing the news MND had taken Mrs McNeill's life on the weekend, Balgownie Fire Station captain Luke Rowles said it was a sad loss.
He said the firefighters at Balgownie had a close association with her and her family.
He said she had visited the station many times to help with fundraising and acknowledged all the work she did to help "find a cure for this horrendous disease".
"We all wish the family the best," Captain Rowles said.
"We have a tribute flag up in our station for the Shining4Sharn team that we climbed under".
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Greg Ellis
Almost four decades in electronic, print and digital media. A writer, presenter, emcee, photographer and videographer with degrees in business management, marketing and human resources and tertiary qualifications in photography.
Almost four decades in electronic, print and digital media. A writer, presenter, emcee, photographer and videographer with degrees in business management, marketing and human resources and tertiary qualifications in photography.
