LAUNCESTON woman Jo Ryan knows first-hand the importance of educating people about Fragile X.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Her son Ben Gower lives with syndrome, which affects about one in 3600 boys and one in 4000 to 6000 girls.
“It’s actually not as uncommon as what people think,” Ms Ryan said.
“Fragile X can affect people in lots of different ways. Ben, my son, is intellectually disabled. A carrier can show no symptoms at all but pass it on.
“Twenty-five years ago when Ben was diagnosed there was very little information and support and he could have gone through life being labelled autistic, but when he had the DNA test, it opened things up for early intervention and the right support. I’m not going to be around forever, and I’d hate Ben to be out there and not understood.”
Launceston’s Town Hall will light up orange at 6pm Friday to mark Fragile X Awareness Month.
“Sydney’s lit up the bridge, Brisbane’s lit something else up, but this is the first time that we’ve been able to do anything,” Ms Ryan said.
