HERE'S THE MUMS
(minus one Mum who was unable to attend this gathering - she was missed!!)
HERE'S THE DADS
(again minus one!!)
xx OUR SPECIAL CHILDREN xx
FRIENDSHIPS BROUGHT TOGETHER BY OUR CHILDRENS UNIQUENESS
![EMILY JEAN and KOOLEN DE VRIES SYNDROME [formerly 17q21.31 microdeletion syndrome]](http://4.bp.blogspot.com/-fte5oieB5CM/UxL49XoufZI/AAAAAAAAAy8/4uKUtGCrpCc/s1600/Blogger%2BHeader%2B2smaller.jpg)
Our journey after a diagnosis of Koolen DeVries Syndrome [also known as 17q21.31 Microdeletion Syndrome]. Follow our highs and lows but most of all follow the achievements and happiness and share in our joys watching our inspirational little girl growing up.
Sunday 20 September 2009
Friends...
For those of you that wasn't aware we have had a couple of meet ups now with a few families that we have managed to trace with the same genetic syndrome as Emily. It was another lovely little gathering with many a shared story and priceless advice and support over this weekend.
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