Spinal muscular atrophy is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement.

But Mr Ahearn, 74, who was guest speaker at Southern Stay Disability Services’ first AGM, has been receiving support to live independently through it since 1995. 

“At that stage I was wheelchair-bound and living with ageing parents who were finding it difficult to manage,” Mr Ahearn said.

“I’ve been with the agency for 23 years under three different names.

“It has grown rapidly to meet a wide range of needs and the staff have been outstanding, including some who have been in my program up to 18 years.”

The care allowed Mr Ahearn to work full-time for 48 years as an accountant with Ryan Moves until he retired in 2009.

“I was having a bit of trouble with the basic things like getting out of bed and going to bed,” he said. “If I hadn’t had this support, I possibly would have been put into a nursing home.”

He also travelled to many places around Australia, including the National Road Transport Hall of Fame in Alice Springs and various country music festivals, with the support of a carer.

“It’s important to get out and about, otherwise I’d be stuck at home,” he said.

As his needs have increased, Mr Ahearn has needed more support. He now has two carers each day, mostly helping him in and out of bed. But he still cherishes the ability to live independently. 

“Absolutely, that’s been the most important thing to me and it’s still working quite well,” Mr Ahearn said. 

Southern Stay was created from the merger in December 2017 of STAY Residential Services Association in Hamilton and Southern Way Direct Care Service in Warrnambool.

Chief executive officer Paul Lougheed said Mr Ahearn’s insights were galvanising for those at the meeting.

 “Hearing from Ray reinforced why we exist, to provide quality support to people who need it,” he said.