Five Balgownie firefighters are gearing up for the climb of their lives – but it’s nothing compared to the daily challenges faced by their friend Sharn McNeill.
The 35-year-old Bulli woman was diagnosed with a rare, aggressive form of motor neurone disease, or MND, in 2013 which is causing her mobility, and speech, to slowly deteriorate.
On Saturday October 14, the Balgownie team – which includes Ms McNeill’s stepsister Belinda Down – will climb the 98 storeys of Sydney Tower Eye in full kit to raise funds for research into the debilitating disease.
Their team ‘210 Balgownie Shining for Sharn’ will be among 595 firefighters participating in the Firefighters Climb for MND, which aims to raise $1 million in 2017.
‘’It will be a gruelling challenge, however it is nothing in comparison to the challenge patients with MND face every day,’’ Deputy Captain Luke Rowles said.
‘’To date we have raised just over $10,000 which is so far one of the leading fundraising teams in the event.’’
Ms McNeill said she was grateful for the efforts of all participants.
‘’It’s efforts like this that keep me motivated to fight this challenge,’’ she said. ‘’This event is now globally recognised which will have a ripple effect towards creating awareness of MND worldwide and hopefully a cure.
‘’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 challenges Ms McNeill physically and mentally. The former nurse is now in a wheelchair, and suffers constant spasms throughout her body. Her speech has slowed considerably.
‘’Every day I wake up and feel positive, full of possibilities and capable of anything and am then reminded, when I go to do something, that I need to adjust my expectations,’’ she said.
‘’I have been independent and capable of anything for 35 years and to have that taken away challenges me every day.’’
In 2014, a year after diagnosis, Ms McNeill pushed herself to achieve her dream of completing an ironman event – with assistance from mate Craig Gruber.
The mental toughness she developed to complete the event has helped her cope better with the degenerative condition. She’s also buoyed by advances by Macquarie University’s MND research team – where all funds from the firies climb go.
‘’The university is currently a third of the way through a trial which is showing very positive results. They are also aiming to begin a second trial which I am hoping to be a part of,’’ Ms McNeill said.
To donate visit firiesclimbformnd.org.au
Then search for Balgownie firefighters Jason Pack, Belinda Down, Brett Swan, Travis Down and Luke Rowles.