Struggling with the disease, Alex and his family were constantly in and out of hospital seeking treatment until a recommendation came from one of his specialists.

"He recommended that we look at getting a CoughAssist machine as it would limit his stays in hospital," Alex's mum Lina said.

"We gave the Spinal Muscular Atrophy Association of Australia (SMAAA) a call and within two weeks we had a machine given to us for however long we need it."

Alex has not been an in-patient in hospital since February 2008.

"When we got the machine we only used it when it looked like he was getting sick," Lina said.

"Once we started using it twice a day, it had a massive impact and Alex hasn't had to stay in hospital since. I keep saying to the doctors that it changed our lives."

While Alex was one of the first people in Victoria to receive a CoughAssist machine, many other people aren't so lucky and find it hard to get the money for the device, which costs $10,000.

The SMAAA relies on donations and fund-raising to afford machines for other suffers.

The organisation plans to raise funds and awareness of the disease next month, which is Spinal Muscular Atrophy month. MAAA is organising a number of events, including a morning tea in Watergardens shopping centre at Taylors Lakes and its fifth annual gala charity dinner at the Melbourne Zoo on August 28.

Details: http://www.smaaustralia.org.au/