The story of Ava
Hi, my name is Ava and I was born with a hemangioma, which is a type of Vascular Birthmark. I also have PHACE Syndrome and Dandy Walker Syndrome. When I was first born, not many doctors in my area knew much about my condition. My parents and I went from doctor to doctor to try to find answers on how they could help me. When I was a couple weeks old, I went to see Dr. Howard Pride at Geisinger Medical Center in Danville, PA where my mom grew up. He did my first laser treatment and also discovered that I had PHACE Syndrome. By the age of two I was having breathing problems and decided to go to Little Rock, Arkansas to see Dr. Milton Waner. He discovered that the hemangioma was pushing against my airway and that it was causing me to not be able to breath and gain weight. At two years old I weighed 12 pounds.
Dr. Waner had to do a laser surgery in my airway to shrink the birthmark. He has also done a number of surgeries to remove my Hemangioma. From the age of 2 to the age of 8, I remember going back and forth to see Dr. Waner for surgeries. After that we decided to take a break so I could participate in school and activities. When I was in middle school I decided I wanted to go back for more treatments. Dr. Waner performed surgery on me in 2014 and 2015. I am currently 20 years old and I have undergone 28 operations because of my birthmark. I also have hearing problems, eyesight problems, and don’t have full feeling on the left side of my face. Â
      Over the past few years, I have worked at accepting my birthmark. It was never easy going to school amd going out with my family and friends. There were times where I would worry about what people would say. I got 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.Â
     When I graduated from high school in 2018, I participated in a program at Hershey Medical Center called Project SEARCH. It is a program for students with disabilities that will help prep them for working in the workforce. The program also helps the students search for full time and part time employment. Throughout the year, students go through 3 different internships at the medical center. The program was a great experience and it was a lot of fun. It was so cool to be in a hospital setting because ever since I was the kid, I wanted to work in a hospital. I was asked by my teachers and  one of the photographers at Hershey Medical center, if I wanted to do a video on the Project SEARCH program that would also feature my story. It was so much fun doing the video and cool to watch it when it was finished. I think that time is when I started to accept my birthmark.  It helped me see that I could accomplish anything I really wanted if I put my mind to it.  At the end of the program I got a job at the hospital in Patient Transport as a DoorAide. Â