Individuals on this list include parents or relatives of someone born with a vascular birthmark, as well as adults with vascular birthmarks who have agreed to make themselves available either by phone, in person, or by writing to discuss your mutual experiences in dealing with a vascular birthmark. None of these individuals are medical experts and they do not provide medical information. Instead, they can offer mutual support from a family perspective.
The Family Resource List is in alphabetic order by state. Family resources outside of the US are listed at the end in alphabetic order of country.
Todd & Lisa Wiseley
Northville, MI 48167
Our daughter had a hemangioma on her cheek the size of a quarter
shortly after birth. We had it surgically removed at age 2 and have
had no problems. We’d be happy to speak to other parents considering
Tom & Pat Koch
Tom & Pat’s son Keenan had a lower facial and lip hemangioma
My daughter Callie had her cheek hemangioma removed by Dr. Buckmiller in Little Rock Arkansas and you would never know that she ever had a birthmark! It is the best thing we ever did for our Callie!
My daughter has a very large port wine stain that travels the length of her body from her head to her toes, only her right leg does not have any birthmark. She is 9 years old and has been receiving laser treatment since she was 12 weeks old, to date she has had more than 60 treatments. We travel from Phoenix to Irvine, California in order to see Dr. Stuart Nelson at the Beckman Laser Institute. We attend the Vascular Birthmark Foundation conference every other year in order to stay abreast of the latest developments with regard to the treatment of PWS. Two years ago our daughter was also diagnosed with KT Syndrome as well. I have been through 4 insurance companies since her birth and now am learning the ropes on travel assistance as well as appealing with insurance. I am always available to answer questions and/or talk with parents that are facing the same challenges as we have. We have picked up a lot of information along the way and have benefitted from sharing information and stories with other families.