By now, if you’ve been reading my articles, you may think you have an idea of who I am. Isn’t that what we all do when watching vlogs and or when following people on social media- think we know who people are based on the content that they are putting out? But, in reality, I’m probably much different than how you imagine me. Today, my readers, I’ll pull back the curtain and give you some insight into who lives behind the article.
To begin with, I was born in New Jersey on May 10th, 2000. However, unlike most babies born with the ability to hear, see, smell, taste, breath and walk eventually- I wasn’t. I had to fight with all my might and earn all that was supposed to be given to me. Before I was born, my parents didn’t know I’d be born Deaf, with partial vision and the many other very serious health problems associated with Goldenhar Syndrome, Tetralogy of the Fallot. In my eyes is a true miracle that I’m even here writing this article.
So after I was born, the doctors noticed I was reticent and breathing too slowly. The doctors examined me and saw my heart was abnormal, and I was rushed off to another hospital for further examination. At that hospital, they said I needed surgery and rushed me off to a NYC hospital for my very first open-heart surgery. It was at this hospital that I was diagnosed with Tetralogy of the Fallot and Goldenhar Syndrome. So, I spent the first month of my life in a hospital in New York City hooked up to every medical bell and whistle there is.
Tetralogy of the Fallot (TOF) is a rare condition of defects that cause oxygen-poor blood to flow out of the heart and into the rest of the body. So, my heart looks and sounds different from a regular heartbeat. The surgeons initially had to cover a hole with a patch and replace my pulmonary value with a pig value. And since then, I’ve had three other open-heart surgeries to keep replacing the pig value with a new one. In total, I have four open-heart procedures before the age of twenty. I hope that the last one in 2019 was the last of the open-heart surgeries because I was big enough for surgeons to put an adult size in at last.
Goldenhar Syndrome is a rare congenital condition characterized by abnormal development primarily within the face area. Most of my face is asymmetrical, as you can see it around my chin area, and I don’t hold my head straight. As for my eyes, I have good vision in one eye and have very low and close to blind vision in the other. My ears are not fully developed, and due to that, I’m deaf and have to wear hearing devices for the rest of my life. I also have a deviated septum and I have skin tags on my face which I’ll probably get removed within the next few years. The biggest thing that slowed me down regarding my syndrome is perhaps the underdevelopment of my mouth and jaw as it affects my chewing. So, for most of my younger life, I was on a G-tube, a port that they place in my stomach that allowed me to pump liquid nutrition in. As I grew older, I was able to eat blended food and got the tube removed at the age of twelve. I can now say I can chew with small cut-up pieces and like trying different foods. I had my first pizza at the age of seventeen, and I loved it.
To say I wasn’t insecure, sacred and stressed going through life with all my conditions would be a lie, but it’s incredible what the body and mind can do and go through. As I reflect back on my life, I’m still shocked at how I made it this far, as I didn’t believe I’d live past 18 years old. Truthfully I think I’m still processing everything and am still insecure about a lot of things. However, my pain, suffering and experiences have shaped who I am today. They have given me wings to fly and the power to fight. Today I’m thankful, happy, healthy and living my best life. I live by the mantra that I’m here for a reason. I don’t know what the next 21 years will bring, but I plan to write a full-length biography in the future, including more in-depth stories of my life. I hope this article has inspired you. If you have any other questions, you can reach me on my Instagram at @HolleyP500