A Winmalee family has battled with the legacy of Huntington’s disease and they’re determined to raise as much awareness about the ‘cruel disease’ as possible.
It’s hereditary and has been described as Parkinson’s disease, motor neurone disease and Alzheimer’s all rolled into one. There is no cure.
Lee and Kirsty Dickens live in Winmalee and know firsthand how cruel the disease can be. Lee’s mother Mary died from it at 47 and Lee’s cousin Luke Zammit, was diagnosed three years ago at age 27.
Mr Dickens recalls as a child not being allowed to play with the other kids in the street because his mum had been labelled a drunk.
The disease is characterised by involuntary movement and lack of co-ordination.
“Unfortunately as human beings we judge a book by its cover. You can put the book back on its shelf or you can choose to open it. You could ask ‘how you’re going’ and get an insight into their story,” Mr Dickens said.
At the age of 20, Mr Dickens decided to undergo testing to see if he carried the Huntington’s disease gene.
“It was like flipping a coin and having a 50/50 chance of receiving the gene or on the flip side, being HD free,” he said.
He tested negative, but his cousin Luke Zammit hasn’t been so lucky.
The family are part of a 20-member Team Heat (for Huntington’s Eradication and Treatment) taking part in a Huntington’s Walk 4 Hope fundraising walk at Parramatta on September 9.
They’re walking in honour of Mr Zammit and his mum Sharon, who also has the disease.
“I signed us up for the walk to get together and show him [Luke] that he is supported and loved,” Mrs Dickens said.
Mr Zammit lives in Melbourne and his mum Sharon went into a nursing home 15 years ago. In the three years since Mr Zammit began displaying symptoms he’s had to give up performing as a drag queen.
“It [performing] would take my mind off it. I had to give it up because my hands got too shaky [for putting make-up on].”
He’s also had to give up hairdressing and now relies on a disability pension.
“Our hope by fundraising is not only to raise money for the HD Association, but to also raise awareness within our network of family, friends, colleagues and the broader community. In our experience, unless you know someone who has HD, or a family affected by HD, it is not a widely known disease,” Mrs Dickens said.
“We can only hope that in our lifetime we see a treatment and cure become available and on offer to eradicate and put an end to HD, just as has been done with other previously ‘non-curable’ diseases.”
Team Heat have raised $5800 and hope to reach $10,000. To donate visit: https://walkforhope2018.everydayhero.com/au/team-heat.