Since it is a little more rare than other types of vascular birthmarks, it is harder to find support. The good thing is that most of those families are just living a normal life... like they're supposed to!
Let me know if you need blog space. Also, if you'd write up your experiences so far and send a picture, we'd love to post it on our awareness site! That way, other parents who come here can read your story all in one place.