DANIHER’S DRIVE – a fun four-day road-trip extravaganza set to raise much needed awareness and funds to find a cure for Motor Neurone Disease (MND).
Harvey Sykes’s family resigned themselves to the fact that Motor Neurone Disease would cut short his life. But they were not prepared for the ferocious speed of this Beast, which also took his mum too young.
The builder walked into a Melbourne hospital one Wednesday in May 2013 because he was having trouble breathing. He passed away just two days later.
Families and MND sufferers always hope for the best. They hope that they will be among the minority that exceed the 27 months average lifespan from diagnosis to death.
Harvey lasted only 13 months, but his legacy continues. Harvey’s Angels, a team in the upcoming Daniher’s Drive – made up of his daughter Angela Sykes, her partner Rob Falkingham, her sister Amanda Elmer and their friend Nicole Droscher – are throwing their fundraising muscle behind the cause.
For them, it’s personal. Harvey’s MND strain is genetically linked. They want to help FightMND fund a cure not just for all those sufferers who are battling the disease, but also for possible future family members who inherit the gene for the disease.
Ten per cent of MND is familial, meaning there’s a family history of MND. The rest of the cases are seemingly random, but they all have the same impact. Gradually the sufferers lose the ability to control their walking, swallowing, speech and, finally, the ability to breathe.
Amanda says her dad, who was 64 when he died, probably suspected he had MND well before he was diagnosed. Later, his family was to discover that he’d lose his footing on building sites in months leading up to his diagnosis. He sometimes spluttered while eating his lunch. He would become lost driving around streets where he’d spent most of his life.
Amanda describes how her dad kept losing his grip on the hammer handle when he raised it to bang a nail into wood on building sites.
“It would fly out of his hand on the upswing. It was the catalyst for one of his very good work friends to suggest he get checked out by a doctor.”
The tests in 2013 confirmed what the girls’ dad probably already knew, but none of them were prepared for the speed it was to take him.
Soon after Harvey’s death, his family became aware of Neale Daniher’s diagnosis with MND. They had been looking for a way to help. It was an easy decision to jump on board the Daniher’s Drive to help raise money.
A friend who manages a Good Guys store donated prizes for a raffle in fundraising efforts. They held a sausage sizzle. They ran “guess the lollies in the jar” competitions in their workplaces. The teachers at the small school where Amanda works offered their services for students to dunk them, all to raise money for their effort.
Last year, Harvey’s Angels raised more than $10,000 for FightMND. And they hope to go even better this year.
They received donations from family, friends and work colleagues – including those of her dad – they ran sausage sizzles outside major stores, they approached individual businesses for contributions and ran a 24-hour charity relay at a local gym.
Amanda’s college organised its own big freeze event, raising $100 a student and they have used Facebook to share their efforts.
Each in the Harvey’s Angels team have two and three young children, all are working and both Angela and Amanda are studying. They fit their fundraising activities into already packed lives.
The family knows that Harvey would be proud of their efforts to fight MND. He quietly endured painful medical procedures without complaining. But he wanted to be last of his family to suffer such a cruel disease.
“That’s why we’re doing this,” Amanda says. “For dad, for Neale and for everyone else who need hope that this disease is being fought and one day will be beaten.”
To donate to Harvey’s Angels: https://danihersdrive2017.everydayhero.com/au/harveys-angels