This is something I know NOTHING about.
However, go here:
and in the drop down menu, chose Lymphatic malformations.
Our Parent Volunteer to answer questions is a father named Greg. While his son is not quite the same age as Kasey, he might have some encouragment to offer. Additionally, he might be able to tell you where to find the answers to the questions you have.
Also, try http://birthmark.org/experts.php
and ask the Lymphatic Malformation expert if he knows of any online (or offline) support resources that you could access.
Try the MSN group... I know if you go to
you can find one that deals only with LM's. If you can't find it, let me know... I know that Corinne knows where it is. I'll have to ask her.
You might try looking around Yahoo Groups as well. If there isn't one, start one!!
Post soon and let me know if you find someone to talk to!