Super Hero Saturday: Meet Erica

What Is Super Hero Saturday?     

Super Hero Saturday is a day dedicated to stories of AVM Super heroes just like YOU! Theirs are stories of courage, bravery, hardship, sacrifice, love and so much more along their pediatric AVM journey. Our AVM super heroes include AVM survivors, caregivers, doctors, and family members who continue their superhero fight after the loss of an AVM Warrior. We hope you will see yourself here and find encouragement and support in the sharing of these

Meet Erica Carnegie!

My name is Erica Carnegie! I am 16 years old, and I am an AVM survivor. I was diagnosed with a facial AVM when I was in elementary school. The AVM was located on my left cheek, just below my eye. Over time, it grew and spread over my eye socket which caused my left eye to be pushed upwards and almost closed. Because of that, my eyes were not symmetrical and my left eye was much higher than my right eye. Sometimes, it looked like my right eye was bulging while the left eye was almost completely shut. It became more noticeable as I hit my mid-teens, and I started getting lots of questions like “What’s wrong with your eye”, “Did someone punch you in your eye?”

Sometimes I didn’t feel like answering and just completely ignored the questions. I started wearing fake glasses to help conceal the state of my eyes, took selfies on the “good” side of my face, didn’t smile in photos (it made my left eye close completely) or took photos with my eyes closed. My mom decided it was time for me to have surgery because she noticed all the things I was doing to conceal the left side of my face.

I was nervous about all the exams because I am deathly afraid of needles and was worried that the surgery might not go well and my face would be messed up for life. However, my surgeon explained everything to me, asked me if I had questions, answered all my questions, was very patient and had a great attitude. This made me feel more relaxed, and I actually started looking forward to having corrective surgery.

On the day of my surgery, January 24, 2018, I was very anxious!! My mom was nervous, but she remained calm so I would remain calm. The needles freaked me out, and the first nurse had a hard time finding my vein, which made it even worse. I started crying because I couldn’t handle the poking of the needle, and I really wanted to leave.

After, the doctor and my mom calmed me down, I decided I was ready to move forward. My mom walked with us as they wheeled me into surgery, kissed me on the head and said a quick prayer. When I woke up, I couldn’t feel my face and could not move my mouth at all.  When we arrived home and I saw my face, I immediately cried because I didn’t know if my face would ever be normal again. My face looked like a giant balloon, and I could hardly see my left eye. I didn’t want anyone to see me, so I wouldn’t let me friends visit until around the third day. They were shocked to see my face, but they were happy that I was okay. My friends visited with me, told jokes, kept me current on school work, watched movies and just hung out at home with me.

When I returned to school two weeks later, I was worried that people would say something to me, but no one did! Instead, they checked to make sure I was okay and were glad to see me return to school. Not everyone is this lucky, so I realize that I was very fortunate to not be bullied or made fun of.

I have always been confident, excelled academically, was involved in extracurricular activities and volunteered in my community. However, I wanted to compete in pageants, but realized that my AVM was in the way. After healing from my surgery, I decided to compete and just go for it. In June 2018, I was crowned Junior Miss of Florida. In November, I competed at the national competition for the title of Junior Miss of America and placed overall 2nd runner up. I also won the National Talent Award and the National Fun Fashion/Modeling Award.

This surgery has literally changed my life! My journey has been amazing, and I have come a long way in the past year. I went from hiding my face in pictures to competing on a national stage and finally talking about a disease I have lived with almost my entire life.  As I shared my story, I found out that I wasn’t alone. Talking to others about my AVM made me feel free, and I decided that I wanted to help other kids.

My Mom and I started researching, found TAAF and made contact. My family went through my AVM journey without any support groups or knowing anyone who had this experience. Looking back, I wish I had a group of people with AVM experience to share my feelings, ask questions and just have them there for support.