If I Raise any money I will dye my hair purple on Sept 6th  :-)

When I was born in May 1971 my life was saved because the Dr delivering me had just read an article about the syndrome on that day, my parents were told to make the most of the time they had with me and to prepare for the worst.   

As the syndrome was so rare I was literally 1 in a million (it is now approximately 1:14,500) , no one around me knew if there was anyone else like me in the UK or for that matter what would happen,  this made it isolating growing up with no one to talk to my age about it, and the endless medical appointments we went through.

At 15 I made a vow that I would not let this happen to anyone else with the syndrome and that someday somehow there would be a place of support for families and B.W.S people from the cradle to the grave, which in some cases is sadly far too soon.  

Now there is a place for support I want to raise funds for specialised equipment and help give families respite and hopefully bring the children together in a specialised holiday so they can meet each other and for a time forget about hospital visits and treatments.

www.bwssupportnetworkukandeurope.com

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