‘When it was my turn to play dress-up, they paused. ‘Oh, Liz, there aren’t any princesses left.’ My confidence was shattered.’: Woman with GoldenHar Syndrome advocates for facial equality

More Stories like:

“The day I was born was both one of the happiest and scariest days in my family’s life. What should have been the most joyous day quickly became an incredibly stressful one. My mother had a scheduled cesarean delivery the day before Halloween, and the weeks leading up to that memorable morning were filled with baby showers and nursery decorating. My parents had no idea that their daughter’s first nursery would not be the ‘Winnie the Pooh’ themed bedroom they had set up down the hall, but rather a sterile, machine-filled, corner of a NICU an hour away from home.

Courtesy of Liz Adams

I was born with a condition called GoldenHar Syndrome, a rare congenital birth defect that affected the growth and development of the right side of my face. The second I was born, I was whisked away by a crowd of doctors and nurses trying to determine how to help. Days after I was born, I went on my first road trip! I spent the first 4 months of my life an hour away from my home in a neonatal intensive care unit that was better equipped to look after me than the hospitals in my area. With my dad staying at the local Ronald McDonald House and my mom back home with my twin sister, those first few months were challenging for us, but they certainly made us stronger as a family.

Courtesy of Liz Adams

I did not meet my twin sister Maddie until the following February, we reunited on Valentine’s Day, and we have been inseparable ever since. My condition has left me with a missing ear, underdeveloped eye, missing jaw bone, and an asymmetrical face. I’ve been through over 30 surgeries, none of which have been easy but those experiences have left me with a deeper gratitude for life.

Courtesy of Liz Adams

Most people spend their lives searching for purpose. Some find it in their career, or education, others through parenthood or as members of a community, but rarely does one have a definitive answer as to what their purpose is. I feel lucky to be one of the rare few that are aware of their purpose. I truly believe I was born with a facial disfigurement for a reason, to help educate others and maybe leave this earth a bit better than I found it. In a book I once read, the author theorized our souls choose the path of our lives before we are even born. Whether you believe in that stuff or not, I think it’s an interesting theory. Sometimes I question my soul’s decision but I trust there is a reason for everything in my life.

Courtesy of Liz Adams

Although I have never doubted my condition happened for a reason, I was not always thrilled about it. One of my earliest memories takes me back to my kindergarten classroom. I can remember the day like it was yesterday, a dozen little girls running in circles, giggling, and playing dress-up. One girl wanted to play ‘princesses’ so we all gathered on a small foam rug and waited to be ‘assigned’ princesses. The blonde girl was Cinderella, the brunette was Belle and as it came to my turn, the girls paused. ‘Oh Liz, there’s none left, you can be the mother… Okay, let’s play.’

When I heard those words, my confidence was shattered. There was no princess that resembled what I looked like, no role for me to play. It was that warm September morning I first realized the impact of the lack of representation for those with disfigurements. That morning will stay with me for the rest of my life not as negative nostalgia but as inspiration, to become that role model a young Liz always hoped for.

Courtesy of Liz Adams

It took me a very long time to be comfortable, proudly saying, ‘My name is Liz Adams and I have a condition called GoldenHar Syndrome.’ For many years, associating myself with my condition brought up feelings of being left out and alone. I thought the best way to ‘fit in’ was to ignore my condition as much as I could. I am so relieved I no longer see myself as someone who needs to go unnoticed, but as someone who has a voice, and that can use it to do good in the world.

Courtesy of Liz Adams

I started my ‘activist’ journey about a year ago. I use quotations around activism because sometimes I don’t feel qualified enough, or smart enough, or experienced enough, but an activist is anyone who advocates for a cause, which I guess I am doing! But getting back on track, my family and I were connected with FACES: The National Craniofacial Association, a wonderful organization based out of Chattanooga Tennessee when I was a baby. FACES helped us out tremendously when I was a baby. Then they helped us become advocates, speaking with other families who were going through the same things we went through. I wouldn’t be where I am today without all the incredible people I have met because of FACES.

Courtesy of Liz Adams

Around a year ago, I filmed a short little video for Face Equality International about the importance of fair and equal representation of those with facial disfigurements. This video nudged me to become a Face Equality activist and I am so grateful to be on the path I am on. My twin sister and I now host a podcast called Courageously Kind, where we tackle the complexities of kindness, and how to make the world a kinder place. It is my passion project I hold close to my heart!

Courtesy of Liz Adams

I can honestly say I am grateful for my condition. My condition has taught me our bodies do not define us, our soul does. My condition has taught me we are only here for a short amount of time but that time is a gift. I hold in my heart so much gratitude for all the beautiful things my condition has given me and the people I have met because of it. To the person on the other side of the screen reading this right now, thank you. I really appreciate you and the time you took to hear my story! Always remember you are here for a reason!”

Courtesy of Liz Adams

This story was submitted to Love What Matters by Liz Adams. You can follow their journey on Instagram and their podcast. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this:

‘Excuse me, my child has a question about your face.’ Others pulled their kids away like I shouldn’t be looked at.’: Woman with Craniofacial differences reminds us to use ‘kindness’ to approach uniqueness

‘I’m not model material.’ I was skeptical. I’ve NEVER seen a supermodel that looks like me.’: Woman with facial abnormality walks in fashion show, ‘Representation matters’

‘The weird looks. Names. Disgust. Laughter. Violence. I just couldn’t fit in.’: Woman with Congenital Melanocytic Nevus claims ‘beauty is diversity,’ learns to love her ‘endless birthmarks’

‘What’s wrong with your face? Fire? Car accident?!’ Complete STRANGERS asked. I reached my boiling point.’ Woman born with Nevus learns to ‘embrace’ her unique differences

Spread beauty and strength for others. SHARE this story on Facebook with family and friends.

For our best love stories, subscribe to our free email newsletter: