To this day, Shelly-Anne Demirov chooses to remember the good times she enjoyed with father Jim Demirov – when he was a mechanic, had a black belt in karate and was passionate about his drag racing career.
But nothing can take the pain away from watching her father weaken and waste away during a 19-month battle with motor neurone disease (MND), which eventually led to the Dapto man’s death in July 2010.
Through that dark period, Ms Demirov and her family though were grateful for the support given to them by MND NSW.
As a way of thanking the support group and to celebrate the life of the family patriarch, Ms Demirov and her family will stage the inaugural Walk to d’Feet Motor Neurone Disease event in the Illawarra this Sunday.
The walk will start at 10am from Bulli Reserve, Trinity Row, behind the Bulli Surf Club. The walk is about five kilometres and is wheelchair and dog-on-lead friendly.
Motor neurone disease is a name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable people to move around, speak, swallow and breathe fail to work normally. With no nerves to activate them, the muscles will gradually weaken and waste.
The patterns of weakness and rate of progression vary from person to person and while some people can live a long time with MND, the average life expectancy is two to three years from diagnosis.
‘‘As I look back on all the heartbreak and devastation that this disease has caused my father, my family and countless others worldwide, I also look back fondly on our many years spent with one another,’’ Ms Demirov said.
‘‘We were both fortunate enough despite this incurable illness to be able to spend our time in each other’s company to share and say the things which we felt needed to be said. We had the time to love each other like only a father and daughter can.
‘‘I am truly grateful to have such a wonderful father and by sharing but a part of my father’s journey and my family’s story it has given me a new found strength and hope of my own as I stay committed to raising both funds and awareness for this neurological disease.’’
Ms Demirov is hopeful many people will attend Sunday’s walk to raise funds so MND NSW can continue to invest in research and to provide the best possible care for those battling the disease.
To register, visit www.online.mndnsw.asn.au/collections/walk-to-dfeet-mnd or show up on the day.
Ms Demirov also plans to do a LightHouse to LightHouse for MND walk later in the year.
‘‘The 47-kilometre solo walk will start from Wollongong Lighthouse. I hope to raise as much as I can for MND NSW,’’ she said.