“Go home and enjoy your son because he will be dead by the time he is 15-years-old” These words and the lack of information and support available in general is what prompted Boris Struk to create Muscular Dystrophy Australia (MDA) so that no other parents should endure what he and his wife went through over 35 years ago.
Muscular Dystrophy is a term used for more than 60 neuromuscular disorders and it is defined as a progressive muscle destroying disorder which wastes all muscles away causing immobility, respiratory problems and cardiac complications. This is a condition which affects 1 in 625 Australians and 82 per cent of children aged 0-14 years with MD are boys. It’s a relentless and disgusting disease. Every day is worse than the previous day. They say the hardest thing is to see someone you love suffer. Well, imagine all the parents out there, their hearts stabbed daily.
Boris has been used as a punching bag for decades by frustrated and traumatised parents and relatives. He could have thrown the towel away and forged a career in marketing which he excelled at. It is his enduring love for his son and sense of duty for the MD community that kept him going. A cure has not been found yet and most likely won’t be found in his lifetime.
Muscular Dystrophy is not widely known in Australia. Maybe it is because progress in research is slow and one of the most challenging fields. This is the last step that Boris would like to achieve. To make Muscular Dystrophy known to the whole country, to have one day a year dedicated to it. A day for awareness and a day for fund raising. A day to recognise our kids and adults in our own backyards who are handed out premature death sentences.
MDA’s website has comprehensive information on all forms of MDs translated in 18 languages. We have been running 106 camps which are offer lifesaving respite for families and their carers. We offer support and programs and fund research. MDA has become an extended family for the MD community. In terms of money, MDA has injected millions into Royal Children’s Hospital and the MDA Neuromuscular Clinic.
Today, when a child gets diagnosed with MD, no parent gets told to go back home and just wait for their child to die. But there’s one more thing that can be done, our duty of care as a community. To recognise and acknowledge our national MD community, just for one day.
This is where National Superhero Week comes in. National Superhero Week 2018 will run from 3rd to 9th September, which will see people across Australia dress as their favourite superheroes to join the fight against Muscular Dystrophy. Register now at: https://www.mycause.com.au/events/nationalsuperheroweek
To find out more about Muscular Dystrophy and to see how you can help support this important cause visit www.mda.org.au.