In early 2011 my son Connor, was diagnosed as Autistic and Mosaic Fragile X, he was not quite 2. It was both shocking news and an explanation of the incredibly hard few years that had led to that point. But I knew, that was just the beginning for us, we still have Connor's whole life ahead of us and since then his baby sister Merryn has also been diagnosed FXS.
As of this Sunday I am now on the Fragile X Association of Australia board. There is a lot of work to be done in relation to education, research, advocacy and the support of Fragile X families. I'm hoping to be able to contribute to that from the perspective of an FX carrier, daughter of a carrier with FXTAS and mother and aunt to full mutation FX children.
posted by ConnorsMum @ 10:14 am
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These days I'm a stay at home mum looking after Connor, 2 and Merryn, 8 months (as at Christmas 2011). In my previous life I worked in the Computer industry mostly with websites and databases. I've lived and worked across a number of cities in Australia like Brisbane, Sydney and Melbourne, as well as in the USA and Canada. I'm now based in Brisbane and haven't had the chance to travel much since starting to have children a few years ago. I started blogging as a way to cope with the ongoing stresses created by Connor or more specifically his diagnosis. Connor has Autism and Fragile X, and while that has massive implications for his future it also has implications for my health too as I am a carrier. I plan to write about our ongoing journey with the syndrome as well as fill in what has happened up to this point on my blog MyFragileXBoy. Update: Merryn has now been confirmed as having Full FXS too.
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