I am mummy to Maisie, aged 8 months old. She has extensive pws on her left arm, hand, shoulder, chest and top of back, plus her thumbs are displaced. The specialist thinks she may have a very mild form of Klippel Treanaury Syndromme and that her arm may/or may not grow longer or fatter. They said she may have to wear a compression stocking on her arm if it gets painful in later life and that she can not go on the pill, because of the clotting factors,,,, not that thats anything to worry about.
We have been told that laser may not be too successful however they are starting her first treatment in 4 weeks. Myself and my partner just can not cope with this. I cant handle the stares, the comments, and Im too scared to take her swimming because when she gets cold it goes blue, and I cant bear anyone staring at my prescious girl.
Im in desperate need of some support from any parents going through the same thing. Please email me anytime