Super Hero Saturday: Meet Amy

What Is Super Hero Saturday?      

Superhero Saturday is a day dedicated to stories of AVM Superheros just like YOU!  

Their stories are of courage, bravery, hardship, sacrifice, love and so much more when dealing with the Pediatric AVM journey. Our #AVM super heroes include AVM survivors, caregivers, doctors, and families who continue the superhero fight after the loss of an AVM Warrior. We hope you will see yourself, find encouragement and support in the sharing of these stories.



Meet Super Hero Caregiver, Amy Carnegie!



A MOM’S PERSPECTIVE

Erica had a facial AVM, and it was located on the left side of her face right below her eye. As it grew, it caused her eye to start closing, which caused vision problems and other issues such as migraine headaches which caused vomiting, pain/burning sensation in her face (at the AVM site). The swelling on her face was quite visible and caused people to ask about it and why her eye was closed. When she had a cold, it got even worse and her face would swell up more and her eye would completely close.

I took Erica to multiple doctors and hospitals, and no one could figure out the problem. I had a doctor who wanted to do eyelid surgery because she thought Erica had a lazy eye, but I declined because I knew that wasn’t the problem.




By late 2016/early 2017, I noticed that the growth was becoming larger, Erica was experiencing headaches on a regular basis (one to three times per month) and her eye was really closing up rapidly. I also noticed that she took “selfies” on the “good“ side of her face, and took full face photos with her eyes closed. She also wore fake glasses to mask her eye and wouldn’t smile because it made her eye close up even more.

After talking to Erica, I told her it was time to see the doctor and get the surgery done because I didn’t want her to be bullied or affected mentally by how her face was being disfigured by the AVM. When I shared with her how I noticed what she did with selfies and smiles, she became emotional because she didn’t realize I was that observant.

I got in touch with her pediatrician who referred us to a specialist. Everything moved quickly after that…. Exams, discussions, reading information, scheduling CAT scans, surgery dates, etc.



On January 24, 2018, Erica had surgery to correct her AVM. The surgery ran longer than scheduled, and she had a difficult time recovering from anesthesia. This was extremely scary for me, and I broke down. When I was finally allowed to see her, I was shocked at how swollen Erica’s face was. Her left eye had completely disappeared into the swelling, she was hardly moving and could not open her mouth or move her face. I had to remain strong for her, so I sat at the side of the bed, cried silently with my tears hitting the floor while I prayed.

Finally, she started mumbling and asking for me.  I cleared my throat and tried to be cheerful so she would not be alarmed. We sat like that for a long time until she became more alert and wanted to know if everything went well. She also wanted to see her face, but I told her we would use the mirror at home.

When we got home and she saw her face, she was terrified, thought she was going to be disfigured for life and started crying. I just held her, cried with her and tried to comfort her.  It was difficult because she couldn’t eat for days, and when she was finally able to take small bites, her face hurt too much to eat.



One year and three months post-surgery, Erica is doing great. She is extremely pleased with how she looks, her self confidence has risen and her spirits are high. As she entered pageants and started working on her platform, she decided that she wanted to share her story. She has also made Rare Disease in Children her platform as she gears up to compete for the Miss Fleming Island High School title on May 3rd.

On April 1, 2019, Erica was announced as the new Miss Teen Nation National 2019 titleholder, and during her reign, she will share her platform and take every opportunity to advocate for funding/research/cure and AVM awareness.

As a Mom, it was extremely worrisome and sometimes stressful as I dealt with Erica’s headaches, blurred vision, etc. However, now she is doing well, and I am very happy to see her shining more than ever. As an 11th grader, this will be her first full school year where I have not had to leave migraine medication with the nurse’s office! Yeah!!