Fragile X Syndrome - Ben Gower

[11.26 a.m.]

Ms ARMITAGE (Launceston) - Mr President, today I will speak about a reasonably little‑known condition, fragile X syndrome, and the incredible people we have living in our communities with its effects.

The fragile X group of disorders is a family of inherited conditions caused by alterations in a gene located on the X chromosome, hence the name fragile X. These disorders include a wide range of physical, intellectual and behavioural symptoms. According to the Fragile X Association of Australia, an organisation that supports people living with the condition and their families and advocates for greater awareness of and research into the condition, about 90 000 people in Australia are impacted by fragile X in some way - some are carriers and some have the condition itself.

Since fragile X is associated with the X chromosome, both males and females can be carriers of the fragile X gene alteration, and the syndrome is the leading cause of inherited intellectual disability. It affects about one in every 4000 males and about 1 in every 6000 females; however, one in 250 women and one in 800 men are permutation carriers of the gene alteration. This is not an insignificant number of people. For males, the fragile X disorder can manifest by being associated with physical disabilities or mental disorders like autism spectrum disorders, attention deficit and hyperactivity disorders, mood instability, and developmental delay or learning difficulties. In females, it manifests differently; about one-third of fragile X females have significant intellectual disability.

It is likely every person in this place knows at least one person affected in some way by fragile X. This brings me to some of the incredible people in our communities who are working towards raising greater awareness of the condition. On 21 July this year, Jo Ryan and her son, Ben, who has the fragile X disorder, coordinated an event in Launceston to bathe the Town Hall in orange light, the colour of fragile X awareness. Even on that chilly winter's night we had an excellent turnout, dressed in orange and holding orange balloons to bring greater knowledge to our community about people who are affected by fragile X.

Ben Gower, a young man in Launceston, was adopted by Jo Ryan and her husband in 1989. With three days notice Jo and her husband had an amazing time getting to know their beautiful little boy so it was easy to overlook Ben missing his first milestone or two. However, when Ben was not walking or talking way past the point it would be expected, they sought help.

After a long while and many tests, a paediatric specialist in Launceston diagnosed Ben through DNA, but it was not until they discovered the Fragile X Alliance Clinic in Melbourne that they learned what they would be in for. It explained everything. Ben had difficulty in school and connecting with his peers. As a naturally kind, understanding and confident little boy, his difficulties in achieving scholastic milestones made it necessary for him to go to a special school throughout his childhood. When he reached Newstead College, however, Ben began to shine as he worked out what he loved and what he was good at. The challenge then was finding the point at which what he loved doing intersected with the job opportunities available. Not being defined in any way by his conditions, Ben's personality of an outgoing, confident and deeply conscientious and thoughtful young man allowed him to pick up some odd jobs with Gunns and the City of Launceston, working outside and with great pride and dedication.

Not content with taking on paid work, Ben also volunteers with Meals on Wheels and with the Mowbray Golf Club, where he has a well-developed and accurate swing. Ben now has a permanent job at Coles, which he loves, and where he is adored by the staff and customers. He is always willing to lend a hand, and he is not afraid of asking if you need help with something. That is just who he is.

I believe it is important to shine a light on the fragile X disorder and the conditions with which it is associated. I encourage everyone to find out more information from the Fragile X Association of Australia online, so we can better understand and appreciate people who are living with it or affected by it.

Ms Rattray - I have met Ben. He is a lovely young man.

Ms ARMITAGE - I saw Ben recently when I was on my scooter, and the one thing he wanted to do was have a turn on my scooter. He could not quite understand that I needed it, but he just said, 'I want to have a go on Rosemary's scooter'.

Mr PRESIDENT - We are all a bit like that really.

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