There’s a sense of relief in Jo Ryan’s voice when she talks about her son Ben Gower.
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The 28-year-old, who has fragile-x syndrome, recently started volunteering at Mowbray Golf Club and with the Red Cross Meals on Wheels service.
He is also preparing to enter the workforce and Ms Ryan said it was largely thanks to the support received through the National Disability Insurance Scheme.
“It’s a completely new world for us,” she said.
“We’ve been able to tailor his supports to best suit his needs.
“Ben has joined a gym, he’s swimming and he’s joined the local golf club, where his amazing and very patient carer has taught him how to play golf.
“He’s meeting new people every day in our community.”
Sunday is Fragile X Awareness Day.
The genetic condition is the most common known cause of inherited intellectual disability and the most common cause of autism spectrum disorder.
In Australia, it is estimated that one child every week is born with fragile-x and 12 are born carriers.
For Ben and his family, it is a condition that has significantly affected their day to day lives.
Ms Ryan said three years ago Ben struggled to socialise and to maintain his fitness, but now he had “transformed” and was motivated to help raise awareness for his condition.
The family have helped organise a sold out high tea at the Mantra on Charles at the end of July.
The event will bring together a group of families affected by fragile-x syndrome, with the aim of raising funds and to raise awareness in the community.
Ben is also hoping to get a job. Recently, a Facebook posted shared by Ms Ryan inquiring about employment opportunities in the community received over 2000 likes and more than 400 comments.
“The responses have been incredible,” she said.
“Every teacher from kindergarten right through to secondary school said great things about him and so did every place he’s ever worked.
“It just shows how many people have met Ben.
“Before the NDIS when we couldn’t get out so much, people weren’t as understanding.
“They wouldn’t have let him play golf on a golf course, let alone work on the golf course before the NDIS.
“It’s really opened people’s eyes, it’s changed the way people look at people with a disability.
“I’m still getting used to the fact I don’t have to worry about Ben anymore. It’s just been an incredible change for both of us. Our home is so much happier.”
