Perth family fight to save their son from rare disease
A WA family are fighting to have a life changing drug approved in Australia to help their son battle a rare disease.
Eight-year-old Joshua suffers from Duchenne Muscular Dystrophy, a fatal muscle wasting condition.
The drug, Viltepso, has been approved in the US and Japan, and while it’s not a cure it could slow the progression of the condition.
His mum Michelle is campaigning the federal government to have the drug approved in Australia.
“This will buy us time,” she told 6PR’s Millsy at Midday.
After hitting a number of road blocks the family have had no choice but to take the steps to import the drug themselves.
“We have decided that we are going to try and import it ourselves but it comes at a massive cost of about $600,000 a year.”
Joshua’s brother has even pitched in, running a lemonade stand at the front of their house to raise funds.
“He sat out the front all day, made the lemonade and sold it … and in the end he raised just over a $1000.”
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