Andrea

Name: Andrea Olinger

Birthday: January 8, 1976

Location: Fayetteville, North Carolina, USA

Family members with EB: Taylor, daughter 3 years old with Dominant Dystrophic EB; Charlie Ray, fiancée' 26 DDEB.

Biography... in her own words:

My name is Andrea Olinger. I am 23 years old, living in Fayetteville, North Carolina with my Mother and my daughter, Taylor. I was born in New Kensington, Pennsylvania and moved to Hershey (PA) in 1989. After graduating from high school in 1994, my Mom and I moved to North Carolina. When Taylor was born, I knew that motherhood was going to be a challenge. When I found out that my newborn had a rare, genetic skin disease, I wasn't quite sure how I was going to make it. I was a single, 20 year old who loved the party scene and all of a sudden I was being thrown into a world that I had no idea of. The world of Epidermolysis Bullosa. When we got the diagnosis of EB, nobody seemed to know anything about it, not even the pediatrician. I remember spending hours on the phone, calling everyone from dermatologists to The March of Dimes, just to get more information about this disease that caused blisters on my pretty baby. Friends searched the Internet for me, my sisters poured over library books but we found little information. What was even more depressing to me was that there was no information regarding a cure, later I found out that there was no information because there was no cure. I knew that I had to do something but didn't know where to start. When we would go to a new doctor, I would educated him about the disease. Sometimes people would stare and whisper about Taylor, so they had to get educated too. Somewhere along the line, educated people became my goal. People always say that ignorance is bliss. Well, for those of us that deal with this disease on a daily basis, we think that a cure would be bliss. About 6 months ago, my mom invested in a computer and I found the EBMommas. What a relief to know that you are not alone in EB World. We had only ever met one other family with EB and all of a sudden, here were 60 other families going trough the same thing that I was! The EBMommas is my extended family. We laugh, we cry, we pick on each other just like a real family. We'd be lost without each other and yet most of us have never met. It is through this extended family that I gain my strength. My strength to educate at least one more person instead of ignoring the looks and whispers. I, like all of the other moms and dads that have a EB baby, will not be happy until a cure is found for our little ones.

Andrea wrote this wonderful poem for Taylor:

She may always wear bandages, please don't stare.
Greet her with a smile that will fill the air.
Look into her eyes, what do you see
You'll see an angel, and not the EB