Federal Member for Hume Angus Taylor caught up with Taralga youngster Beau Cosgrove at Parliament this week to discuss his progress in an Enzyme Replacement Therapy trial.

Beau, who has a rare disease called Morquio A Syndrome, was accompanied by his mum Sam. They first met Mr Taylor at the Taralga Show five years ago.

“It was terrific to have Beau and Sam at Parliament House to allow my colleagues to hear first-hand from Sam just how well Beau is doing as a result of the trial,” Mr Taylor said.

“Beau and his family have shown tremendous courage and I’m delighted for them that this drug has helped Beau to just be one of the boys.”

For the past two years Beau has been travelling from Taralga to Westmead Hospital to participate in the trial. Sam said the family was amazed by the difference the drug Vimizim was making.

“After the first week on the trial I immediately noticed he had more energy,” she said.

“Last Christmas he had his swimming lesson, went to the oval and played cricket with the local kids. He then played at sports club and danced to his favourite country songs until 8pm. He was up and going the next day with no need to recover and no complaints of pain.”

Mr Taylor said Morquio A Syndrome was part of a group of disorders known as Mucopolysaccharidoses (MPSs), which impacts the body's ability to produce an enzyme to break down waste products. The enzyme deficiency causes progressive damage to cells and tissues throughout the body, heart and other organ failure, and reduced life expectancy.

The event at Parliament House was to raise awareness and support of rare diseases in the lead up to International Rare Disease Day, on Monday 29 February.

Sam, Beau and the MPS Society are lobbying for Vimizim to be approved by the Pharmaceutical Benefits Scheme, with Mr Taylor making representations to the Minister for Health on behalf of the family.