Genevieve DeLong - Spring 2004

My name is Genevieve DeLong. I’m 16 years old and live in Florida. I was born with Amniotic Band Syndrome, which affected my facial features.

When I was born I didn’t have bone over my right eye and my left eye didn't fully develop, leaving me with low vision and very little peripheral vision. Also, one of my nostrils wasn't developed fully and my jaw was crooked.

I’ve had nine reconstructive surgeries that have helped correct some of the maxillofacial and cranial problems. I’ve had three other surgeries in an attempt to correct my lack of a sense of smell. Most all my surgeries have been done at Medical City Hospital in Dallas, TX, where I feel safest about the care I’m
receiving.

As for school, I’m a very good student. I’ve received a lot of awards
for my grades and a first place award in a writing expository. I received an award for best behavior and another for getting
along with others. And in P.E., I received a gold medal for a track and field event.

I like to read and watch TV shows — “ER” is my favorite. The reason why I like the show is because I can relate to some of
what the patients have to go through. And I like the dramatic storylines.

I also enjoy going to the mall with my family. Sometimes when I go
people look at me, and I think of what they could be saying. For
example, they might say, “Yuck, what happened to her?” I have to
keep saying to myself, “Don't worry about it. Don't pay attention to
them. There are other people out here that don't think that way.”

I found out about Cher’s Family Retreats, and my family and I are going to go to this year’s retreat in Tempe. I’m hoping to make new friends and maybe even meet Cher in person.

Sometimes I get mad at the fact I don't have friends around the block to hang around with. My cousins come visit, though, and I hang with them and go to the mall. One of them in particular
helps me out by giving me tips on how to deal with things that are
troubling me.

Some kids make fun of me, but I don't let it bother me much. Sometimes I know how to deal with the problems I have, and,
then again, sometimes I can't figure it out and need some help.

Over the years I have met incredible people, friends and family, who have helped me and are there for me whenever I need them.

Most of all, I believe all of the things that I go through are just obstacles that can be moved out of the way or dealt with in
some way. In other words, it may be in my way today — but it won’t be in my way for long.

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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