ACPA Family Services

Theresa Koons

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Name: Theresa Koons

Location: McLean, Virginia

Relationship to affected individual: I was born with a rare type of Crouzon Syndrome.

How and when did you come across CPF?: I am a cleftAdvocate Pathfinder and attended CPF’s 2008 Connections Conference in Philadelphia, Pennsylvania.

Why have you chosen to financially support CPF?: I am the ninth of ten kids and was the only child born out of the ordinary. My parents were unaware of my condition before my birth. I have had 29 operations, and sadly, there will most likely be more. Crouzon Syndrome affects the bones in the head and mid face and causes tissue and skin infections.

CPF Donor Spotlight, Theresa Koons
Theresa with her cousin, Scott.

Growing up, I felt left out and did not feel like I belonged in the family. I was confused because I did not know there were others out there like me. When I was 21, I went to Johns Hopkins and found out that there are two different types of Crouzon Syndrome. I am the oldest one in the United States with my condition. I found this very confusing and have since devoted myself to helping others. I was also shocked to discover that I have a cousin, once removed, who has the same condition, and who has been through similar experiences in life. It was breathtaking to find someone who could understand what it’s like to live in my shoes. I no longer felt like an alien. The difference between my cousin and me is that he grew up around support groups and camps for people dealing with facial differences. Through these experiences, he gained self confidence at a young age.

Before college I dreamed of seeing the world. It was only when I went to college that I discovered who I truly am. Finally I was able to be me – an adventurous girl who was determined to see the world. I have now traveled to many places in the United States and have even visited Canada. I am accomplishing my dream. I have only recently been able to connect with others who share my experience. I feel like I am looking in the mirror for the first time and finally realizing who it is I’ve been looking at all this time.

CPF Donor Spotlight, Theresa Koons
Theresa celebrating Christmas in Los Angeles with a friend.

I now have another dream: to reach out to kids with facial differences. I feel a connection to them. All my life I have been told that God has a calling for me. I feel this is the calling. I feel connected and I feel like I belong. I can honestly say I feel at home. Working with cleftAdvocate and CPF has helped me feel this way. I’ve discovered that home is not just about where you are born, or where you live; home is the place where you know you belong.

I’ve chosen to support CPF because I feel that people with craniofacial syndromes should stick together. If I can make a difference to one child, then that is enough for me. Events like CPF’s Connections Conference are important. The sight of kids gathering together and knowing they are not alone is worth it all. How is history made? History is made when something different happens. This is exciting and different – Seeing these kids connect at such a young age is very special!

Other interesting facts: Theresa is a teaching assistant at Bishop O’Connell High School in Arlington, Virginia. She has taken photos and made videos for the school’s website. Click here to see Theresa’s work.