Suggest Treatment For Klippel Trenaunay Weber Syndrome

My cousin's wife had a baby in Argentina 3 days ago. He has been diagnosed with KTW and Preteous Syndrome. Doctors over there have never seen this syndrome or know how to proceed. Can a doctor in the US look at test results and recommend a course of action? Is there anyone in South America that has actually treated this kind of syndrome, any information would be really appreciated!!! Karina from Miami