A MESSAGE FROM KELLEY

I feel as if I have been through a lot in my life, but each part has made me into the person I am today. I think if I hadn't had these challenges to face, I wouldn't be half the strong, caring person I am today. I do have many things that scare me but I think through God I can do everything and anything life throws at me.

My family has been the biggest part of my life. My parents are by far the strongest people I know and I don't think I could ever repay them for what they have done for not only me, but my brothers as well. My brothers are my heroes. They have to deal with the annoying little sister but yet they are always there for me. Being the big, protective older brothers can be tough, especially with a situation like mine - with a lot of teasing, and name calling. They are there for me every step of the way and I just wish I could do as much as they do for me, for them. All the rest of my family, aunts, uncles, cousins, and grandparents, they are the best and I am so lucky and am so grateful to have this kind of support all the time.

I used to hear the word surgery and get the chills and respond with a quick jittery "No way!", but as I have grown up, I have decided surgery will be in my future. It is something that I think could easily boost my self-esteem which I feel could make things a lot easier in my life. Every teenage girl has self-confidence issues, but it's the stares and the rude questions that have made me put surgery into major consideration.

The Romberg Connection has really helped my family. The people are amazing; the stories are sad but truly inspiring, and the support group is so strong, you feel like you're talking with family. I think if it wasn't for the Romberg Connection, my family would have been incredibly devastated. It's hard not knowing what it is; harder knowing no one else you can relate to. I am lucky in this situation because I keep in touch on a regular basis with people with Romberg's. They happen to be some of my best friends. I think we all help each other, but in a more social way.

One of the greatest things I think my family could have ever done was go public. It was a chance for us to get our story out, and find more people affected with Romberg's. I think we have made a huge impact in finding more people with Romberg's, and knowing that makes me feel almost completely accomplished. A cure would be my final accomplishment.

I see having Romberg's as just another slight challenge in life. We all run into them, some of us just can't get through a lot of them. I feel as if God gave this to me for a reason, because he knew I could become a strong enough person to overcome the troubles. I don't see this stopping me from doing anything else that any other teen can do, nor do I see it stopping me in the future.