Meg Gray - Spring 2009

I was born February 27, 1982, seven weeks early, with Treacher Collins syndrome. This type of syndrome is a facial anomaly that causes an underdeveloped jaw as well as downward-slanting eyes and other facial features. The doctor who delivered me described my ears as looking like “cauliflower.” With that description, my mom didn’t know what to think. Her only concern was if I were going to be healthy and have a happy life.

I had a tough start in the NICU incubator. I was 4 lbs, 3 oz, and then dropped to 3 lbs, 6 oz. With the help of the doctors and nurses, I was able to get to a healthy weight. I couldn’t eat on my own at first. I had a g-tube.  My parents were able to take me home when I was 100 days old.

I also have moderate conductive hearing loss in that my ear canals are closed. Right now I wear a bone conduction hearing aid. I use American Sign Language on occasion, and it’s a nice backup when I’m in loud places or my battery is running low.  She would go home and cry herself to sleep. She didn’t even want to wake up to go to school, but she did because she knew she had to be strong.

Throughout elementary school, I had a few surgeries to rebuild my ears. I had a rib graft to build my upper ear lobes. Later, I got tired of the very long process and as a preteen, I decided on no more surgeries. I wanted to enjoy my life.

Today, I work in an Individual Options Waiver program, where I provide care for those with special needs. I enjoy spending time with my significant other, friends and family. I also like working out with Wii Fit, bike riding, seeing movies, traveling, reading and blogging.

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

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