Hello,

My name is Karen and I am the current manager of the Trisomy List and I co-administrate the Siblings List with Sue.

 

I am the proud mother of three children, Virginia who was born in 1978, Amanda who was born in 1980 and Alex who was a latish arrival in 1994. Alex was born with Trisomy 18 mosaic. I also have a brand new grandson, Dylan who was born in August 1999. Together (well the girls now live on their own!) we live in Kirrawee a suburb of Sydney in Australia.

It's a lovely spot right near the beach and a The Royal National Park.

 

Because of Alex's diagnosis I became interested in Trisomy 18 and other rare trisomy conditions. Unfortunately at the time of Alex's diagnosis there was little available information here in Australia about Trisomy 18. And that began my search for information. In 1996 I got hooked up to the "net". There still wasn't a lot of information on the net but I did manage to meet up with a few wonderful parents of children who also had a trisomy diagnosis. As a result, late in 1996 we started the trisomy lists with just 6 families. Since that time we have grown considerably!!

 

Prior to Alex's birth I worked as an occupational therapist in developmental disability. Never did I dream that I would one day be sitting on the opposite side of the table. Currently though I am a full time, single mum - and love every minute of it! In my spare time I research trisomy and related issues, co-ordinate SOFT Australia and am starting a mosaic trisomy contact register. I also like cross stitch, researching my family tree and unicorns

 

I never want others to feel as lonely and scared as I was when I found out about Alex's diagnosis, so if there is anything that I can do to help, and suggestions that you would like to make, please don't hesitate to contact me. I spend a lot of my spare time researching and educating myself about trisomy and related issues. Though I still say that the parents are the "experts"!!

 

 

 

 

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thFebruary 2000

 


 

This site was last updated on 12th February 2000