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.
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.
Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.