Port Wine Stain Resources

During all of our research we have stumbled upon some very helpful and supportive resources in regards to Port Wine Stains. We thought we'd compile them here to help other families going through the same thing, or for anyone else who is interested.

Vascular Birthmarks Foundation: http://birthmark.org/

The leading not-for-profit in the world for children and adults affected by hemangiomas, port wine stains, Sturge-Weber Syndrome, Klippel Trenaunay Syndrome, and other vascular malformations and syndromes.

Things that we found helpful about the website include up to date research, comments from experts, how to navigate health insurance coverage, and access to forums of families going through the same thing as us.

KidsHealth from Nemours: http://kidshealth.org/parent/medical/heart/port_wine_stains.html

KidsHealth is a website that combines health information for parents, kids and teens that is free of medical jargon. As part of The Nemours Foundations's Center for Children's Health Media, KidsHealth also provides families with perspective, advice, and comfort about a wide range of physical, emotional, and behavioral issues that affect children and teens.

From the link above you can go to a page that is designed for kids. It has a lovely story about a boy Evan who was born with a Port Wine Stain. When he was young, he asked his mom why there were no children's books with kids with birthmarks. They couldn't figure out why - so they wrote and published one! Its called "Buddy Booby's Birthmark." We just ordered it and can't wait to read it to Enler!

Medline Plus: http://www.nlm.nih.gov/medlineplus/ency/article/001475.htm

Medline Plus is a service of the U.S. National Library of Medicine and the National Institutes of Health. Here you can find all the facts about Port Wine Stains and lots of helpful links.

You Tube Videos:

There are many beautiful videos compiled by families and kids themselves affected by port wine stains. Here are a few of our favorite:

Port Wine Stain: A Documentary - by Dakota

http://www.youtube.com/user/365Dakota

Calley's story

http://www.youtube.com/watch?v=no9vF8douq0&feature=related

Aiden's story

http://www.youtube.com/watch?v=oty5h12DMCQ&feature=related

This is all we have so far! We'll update as we find more resources. :)

Here's a recent pic of our little guy playing with paint at school.