Twenty-six years later, the syndrome is finally making its way into the public consciousness thanks to Fragile X awareness day, marked on July 22 every year.

Ms Ryan said support options for the syndrome, which is the most common known cause of inherited intellectual disability, had come a long way in recent times.   

“Ben came into our lives nearly 28 years ago and just after his second birthday he wasn’t meeting his milestones or keeping up with his cousins, and after our third paediatrician he was finally diagnosed with Fragile X,” Ms Ryan said.

“We had to have the therapy and the speech and all the rest of it to get him to school age, then there was a difficulty finding a school that would accept him, and that was ongoing all through his schooling.”

RELATED: Fragile X high tea fundraiser photos

Every week in Australia one child is born with FXS, which affects one in 3600 boys and one in 4000 to 6000 girls.

Mrs Ryan said the importance of educating the community about FXS couldn’t be understated. 

“The community’s not always understanding of that but they’re getting better.

“To get the message out there it just helps because people take a second look and give you a pause for grace.”

A high tea fundraiser held in Launceston earlier this month highlighted increasing community awareness, with 110 people turning out to support the cause.  

On Saturday night, Launceston’s Town Hall will be lit up in orange for an FXS function, which will see 100 orange balloons released and orange scarves up for sale.  

Community members are encouraged to wear orange to show their support.

Ms Ryan said Ben was a certainty to attend - potentially fresh from a round of golf. 

“Ben’s a very keen golfer, he cycles, he mows the lawns and he delivers meals on wheels for Red Cross.

“He’s a member at the Mowbray Golf Club and the aquatic centre so he’s very active.”