My name is Ava Pyles. I’m 22 years old and I was born with a hemangioma vascular birthmark on the left side of my face. I also have PHACE Syndrome and Dandy-Walker Syndrome. I have had a total of 32 surgeries and 35 laser treatments. My birthmark has affected my eyesight and my hearing and caused breathing problems as a child. When I was first born, not many doctors in my area knew much about my condition, so we had to travel a lot for my treatments. I traveled from Boston to Little Rock, Arkansas, and to New York for treatments. I took a break when I was in middle school and high school. I decided to get myself involved in a bunch of activities in high school like Cross Country and Track and Field. With a lot of hard work, I was able to make the varsity team my senior year. I love to run today and I have a total of 90 racing bib numbers. After graduating high school, I participated in a program at Hershey Medical Center called Project SEARCH. It’s a program for students with learning disabilities to help find full-time or part-time employment. At the end of the program, I got a part-time job in the Patient Transport Department as a DoorAide where I have currently worked for the past 2 years. I’m also a college student working on my associate’s degree in science. Additionally, I’m an Ambassador for the Vascular Birthmarks Foundation. I found VBF on social media about 4 years ago and became an Ambassador about 3 years ago. Since then, I have joined the Global Ambassador Council and helped run the virtual and regional meet-ups committee. As I have gotten older, I have learned to accept my birthmark more and know that’s a part of who I am. I can also decide if I want treatments or not. I’m currently getting laser treatments with Dr. Geronemus and just had nose surgery with Dr. Levitin.
The Vascular Birthmarks Foundation has helped me find the right doctors to treat my vascular birthmark. VBF connected me with Dr.Geronemus at the Laser & Skin Surgery Center of New York, where I currently get laser treatment. They also connected me with Dr. Levitin at the Vascular Birthmark Center, where I recently got my last surgery. I have also connected with many people who have vascular birthmarks through the Global Ambassador program.