Vascular Birthmarks Foundation Forum - View Single Post - Heart Problems and CMTC
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Old 07-31-2011, 02:33 PM
abatie abatie is offline
Senior Member
Join Date: Oct 2009
Posts: 240

I think they were in the Washington D.C. area. I really considered canceling my surgery when we were contacted about it. There are a couple other families that I am in contact with on Facebook that go every year. The other thing I need to figure out is the cost of joining so that she can actually be evaluated. We would have to join the group in the Netherlands from what I understand. The price is listed in Euros and I know nothing about conversions. I know that at least one of the other families has also went to the Netherlands. Our doctors here aren't very supportive (although I think Mayo would be) as they don't understand why we need to see doctors from another country. I just feel in my heart that she needs a proper evaluation by people more familiar with CMTC. Also, if we could go we could meet some other families (which I desperately need). I feel so alone in this craziness we have faced. It isn't like when I taught special ed. I used to be able to network parents easily with other parents that were in similar situations. I can't do that except through this board and Facebook. As Becca gets older she needs to realize there are other people like her. She is smart for a two year old. She realizes that her leg looks different. She wants her temp. checked because we do that regularly during the winter (because her body temp. drops). She will realize quickly that nobody around her has anything like she does. I remember as a kid being bothered by the little brown birthmark I have on my leg and lots of people have those. I can't imagine running around in shorts with marbling that change color from my hip to my toes.
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