Tuesday, 5 July 2016

Fragile X Awareness month - Day 5

If you want to find out more about FX you can go to the Fragile X Association of Australia website. I will be sharing our families story.

Like his cousin Connor, Bryn is a little boy with Full Mutation Fragile X. However in addition to his Autism diagnosis, Intelectual Delay and being completely non-verbal, Bryn has severe gut issues. Bryn has never eaten or drunk orally, all of the sustenance he gets is provided via a PEG (Percutaneous Endoscopic Gastrostomy) tube. Bryn is in an even rarer group who have two or more completely unrelated conditions.

The problem with children who have unrelated issues is they are even harder to diagnose. In fact if it wasn't for Connor, no one would even have thought to test Bryn for Fragile X at all.

Our little man finds it hard to deal with the world around him, but despite all he has to cope with he is a sweet boy who finds ways to interact with his family. He has a special connection with Connor and Merryn who adore him and they will often be found occupying the same space when we are all together.


http://fragilex.org.au

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