Greenvale’s Boris Struk remembers taking his son Ryan, then three, to a doctor and being told his boy was unlikely to live past his teenage years.
That was 30 years ago. Ryan had been diagnosed with Duchenne muscular dystrophy, a muscle-destroying disorder that affects about one in 1000 people worldwide.
“There was no information provided to me, only a two-line paragraph describing the disorder from an outdated medical book,” Mr Struk said.
To quote a line from Ghostbusters, “when the going gets tough, the tough get going”, and that’s just what he did.
Ryan is now 34 and Mr Struk snr is both the founder and executive director of Muscular Dystrophy Australia (MDA).
The elder Mr Struk is one of four finalists for next year’s Victorian senior of the year award. The winner will be named on October 28 and be considered for the national awards to be announced in Canberra on January 25.
Since its incorporation in 1984, MDA has provided more than 500,000 hours of respite for families affected by MD and about 150,000 hours of helping tertiary students undertake work experience.
The charity has also raised more than $43 million for support services and research.
Its ChallengeMD! fundraiser brings groups of MD supporters together to complete national and international challenges such as cycling in Vietnam or trekking in Nepal.
For more details about MDA, visit www.mda.org.au