Kane

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My name is Kane Liam Butterworth.  kane.jpg (47321 bytes)I was born 17/4/95.   I was diagnosed with WS when I was 3 months old.  The doctors gave me the FISH test after concerns about my heart.  I went on to have surgery to repair my SVAS at two years old, which was successful.  But, unfortunately, due to unknown events during surgery or in intensive care at the Sydney Children's Hospital in Randwick, Sydney, Australia, I did not get enough oxygen -- resulting in a massive and defuse cerebral oedema.

I now can not walk and have limited use of my arms and use a wheelchair.   I have been classified as a spastic quadriplegic and the jury is still out on the other areas of my brain and my potential for future healing and development . It is sad, as before my surgery I was able-bodied and didn't appear to have any obvious retardation.   I loved running around at the beach with my big brother, Tyson.

I am now nearly eight years old and have a little sister called Paloma, who helps my mum and dad, who love me very much, to look after me.  I still have the occasional seizure, which is a bit scary.  I am a very happy boy who loves trucks , motorbikes & going for walks.  I am very social and love to be around kids playing and making lots of noise.  In fact, I love loud noises and have a big voice which is very loud.  I have my own language which only my mum can understand.  I now go to school, which is great and started to learn more words.  I use my mouth and tongue to pick things up and maybe one day I will be able to use my hands.  If your parents would like to talk to mine and have had a similar event, don't be shy.  Maybe we can help.

Kane Liam Butterworth

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Last modified: April 15, 2007