MICHAEL Clark wants you to help flex a little muscle and help to find a cure for the disease that is gradually robbing him of his ability to walk.
It was not until Michael was aged in his early 20s, just like his elder sister Janine, the neuromuscular degenerative disease Friedrich Ataxia started to show in his body.
For a long time, Michael said he would try to mask it as a limp or pass it off like a football injury. Now aged 29, Michael wants to share his story in a bid to raise awareness for the little-known genetic condition which has no treatment and no cure.
Michael and Janine are hosting an open Lend Us Some Muscle event on Sunday in a bid to give attention to the rare disease and raise funds for not-for-profit charity Friedrich Ataxia Research Association.
The condition affects Michael's coordination, balance and his legs. He considers himself lucky.
Predominately diagnosed in childhood, the condition can impact a child's speech, heart and hearing. Many are in wheelchairs by the time they reach adulthood and can have complex related issues like scoliosis.
"I go to a clinic in Melbourne each yer for specialist appointments and you see all the younger ones losing their speech and realise how lucky you are," Michael said.
Each year my legs deteriorate a little bit more. For children, it's a lot more complicated.
There were a few clues for Michael that he might have Friedrich Ataxia. As an active footballer and cricketer, Michel noticed he was not running so well anymore and his coordination was a little off. Initially thinking it might just be tiredness or other factors, Michael's dad encouraged him to get tested and Michael was diagnosed aged 21.
Janine is his inspiration for refusing to let the disease slow down her life. A popular community photographer, Janine works four days a week, is actively involved in Sebastopol Football Netball Club and has a family, including a son who is a promising Victorian Football League umpire.
One in 90 Australians carry the genetic mutation for the disease but most remain unaware unless it impacts their family, according to FARA. Neither of Michael and Janine's parents have the disease but both are carriers.
Without treatment, Michael said the best he could do to slow down the disease's progression was to stay active. Michael maintains a strengthening program in the gym, pool, Pilates and physiotherapy and fits his work in information technology around that.
Walking more than 500 metres can be a challenge for Michael but he still managed to find a competitive sporting outlet - and his mates
I'm playing lawn bowls and it's the best thing I ever did
"I'm playing lawn bowls and it's the best thing I ever did," Michael said. "A lot of my mates are playing too...they love how competitive the sport is."
Lend Us Some Muscle is at Red Lion Hotel on Sunday, 2-6pm. People are encouraged to sport a (temporary) tattoo on offer in support. More details on FA, visit: fara.org.au.
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