Heart Problems and CMTC - Page 5 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > CMTC

Reply
 
Thread Tools Display Modes
  #41  
Old 07-31-2011, 12:08 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,711
Default

When they do, where do they go? I mean, where do they stay in the US? It's a shame you can't go there and get her evaluated and have a little vay-cay, too!!!

Missy
Reply With Quote
  #42  
Old 07-31-2011, 01:33 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 236
Default

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.
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump