Six-year-old Taralga cowboy Beau Cosgrove will be one of 20 children across Australia to receive life-saving treatment for a rare medical condition at no cost.

Beau has been living with Morquio A Syndrome since birth, with the only available treatment Vimizim costing around $400,000 a year.

Federal Member for Hume Angus Taylor said the Government this week confirmed it would make Vimizim (elosulfase alfa) available under the Life Saving Drugs Program from August 1, this year.

“It’s an awful disease that cruelly affects children like Beau,” he said.

“I know having access to Vimizim will be life-changing for Beau and his parents Joe and Sam, his younger twin brothers Zac and Ty, and younger sister Kathryn.

“Beau and his family are tremendously courageous and I hope this week’s announcement goes a long way to making a profound difference for them, and other families of loved ones with Morquio A.”

Morquio A Syndrome, or mucopolysaccharidosis (MPS) type IV A is an inherited metabolic condition.

People born with the syndrome are either missing, or don’t have enough of, a crucial enzyme needed to break down long chains of sugar molecules. As a result they have abnormal development and a possible early death.

Vimizim is the first and only available enzyme replacement therapy (ERT) for patients with Morquio A.

Beau’s mum Sam described the diagnosis of Morquio A as like “mourning” the loss of your child – it’s a condition which stops children being children, “no sports, no nothing”.

Sam knew that a clinical trial was the only option for Beau and registered him for access to ERT in late 2012.

It wasn’t until a year later that Beau was finally accepted onto Dr. Kaustuv Bhattacharya’s drug trial at The Children’s Hospital at Westmead in Sydney.

“ERT has been a miracle for Beau. The difference in him, on the treatment, has been remarkable,” she said.

“He’s been able to go to a mainstream school, will be able to work in a normal environment in the future, and, ultimately therefore, he’ll be able to contribute to society.”

While Sam accepts that Beau will never be cured, she said that ERT was providing people living with Morquio A hope for the future.

She stressed the importance of it being made broadly available, so that all Australian Morquio A families like hers can be afforded the same benefits.

“None of this would be possible without ERT. And it is because of this – seeing the benefits firsthand – that today’s (Thursday, June 15) announcement means so much,” she said.

Mr Taylor said adding medicines to the Life Saving Drugs Program was rare and Vimizin was only the 13^th medicine to be added.

“It will cost $44 million over five years to treat 20 children. We are able to make this life-changing listing today because of our responsible financial management of the cost of medicines,” he said.

For further information go to the Life Saving Drugs Program website: Visit www.health.gov.au/LSDP