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.
I've started a petition to try and get the Australian Government to allow Mosaic Fragile X children to be included in the Better Start initiative. I've written some information about it in my Mosaic Fragile X page. If your interested have a read or just click on the Mosaic Fragile X Petition link in the right hand menu to go straight to the petition.
posted by ConnorsMum @ 5:02 pm
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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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1 Comments:
I would sign this petition more than once if I could.
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