Newport’s Amanda Elmer lost her father and nanna to what she calls The Beast – motor neurone disease.
Footballing great Neale Daniher has put the disease in the spotlight, and Ms Elmer is joining a fundraising event named in his honour and dedicated to finding a cure.
“Sadly, my family is all too familiar with this disease,” Ms Elmer said. “My dad died of MND in 2013. He was diagnosed in 2012.
“My poor father knew this disease all too well, as it had also taken the life of his beloved mum 30 years earlier.
“You cannot imagine his fear when it was confirmed that he also had this paralysing disease. It was just devastating to see my dad deteriorate so dramatically.”
Harvey Sykes was 64 when he died.
Ms Sykes said the disease had no treatment, no cure and no survivors.
“In losing dad to it, he would have been so surprised at the amount of awareness now,” she said.
“When dad passed away … people had never heard of it. Nanna was a really proud person – very well kept and beautiful hair …when she was deteriorating she asked that none of us would go and see her.”
Ms Elmer has formed a team called Harvey’s Angels, in honour of her father, to participate in the Daniher’s Drive.
The four-member team must raise $4000 by August 4 to qualify for the four-day road trip to raise awareness and funds to help fight MND.
It has raised just above $1000 to date.
For more information and to donate: curemnd.kindful.com/danihersdrive/team-sykes.
