Jennifer

Jennifer is 23 years old and was diagnosed when she was 18 months old.

Here is her story...in her own words...

"I'm not good with words but here it goes. Let me start out by saying that my Mother is one of the strongest people I know.

Secondly, this is going to be hard for me because all my life I have done my best to put aside that I am different. My family has always treated me normal so that is what I am. I may not look like a model and I sure can't do things exactly the way others can but I've always managed to do what I want.

Now back to my Mom...she fought from my birth to find out what was wrong with me.

At the time we lived in Michigan and I was seen by the top doctors in the surrounding areas. They thought I had Downs Syndrome but my mother wasn't satisfied with that diagnosis. She did not believe that I had it. Little did she know that one day she would almost wish I did in fact have that or some other widely known syndrome. Life when I was little wasn't easy. I was constantly having tests done and seeing new doctors, for a young child this is tramatic. I never had real good hearing and learned at a young age to read lips, why I picked this up I will never know but it has helped me greatly.

My Mother had another baby in 1988, my sister was tested for HCS and she does not have it. My family moved to Tennessee when I was 5. Throughout the years the doctor visits become more frequent, trips to Vanderbilt Medical Center every couple months to a geneticist. A lot of it is a blur to me. I spent the first 14 years of my life with 6 teeth in my mouth and towards my 14th birthday I was down to 4 teeth. When I was almost 15 I found a dental specialist who made me dentures for top and bottom. He was truly a blessing.

The bullying didn't happen as much in school and I made friends. I wasn't a terrible student by I did struggle in school. I couldn't wait to get home and be in my room playing with my dolls. When I entered high school things started getting better. I was fitted for a hearing aid, I had a semi-boyfriend and I even went to Prom.

Then my parents divorced and my father brought up all my medical problems and basically disowned me. It's been 4 years since I had any contact with him. Now I'm 23 years old, I went to college for 3 years and was majoring in Early Childhood Development. I love children. I had to stop going to college because my physical condition became worse. I fractured my hip and my hearing got worse. Since then my vision has started getting bad. I have constant headaches due to the fluid on the back of my head. I pretty much just get up each day and hope I feel good enough to actually do something. I know there are PLENTY of other people worse than me and who feel pain non-stop. I do not complain often. In fact, I had double pnuemonia a couple of months ago and I never once told anyone I did not feel good. I push myself constantly but this is just me.

In recent years I have come to terms that I will not have children. The risks are too much, my doctors have said. I'm OK with that now, but there was a point when I wasn't. I wish I could write more but my wrists are cramping up. I hope this tells a little about me. Oh, and I have never met anyone with HCS. I found 2 boys with it last year over the internet. Never met anyone face to face and the doctors never suggested it when I was younger. Like I stated above, my doctors saw me as an experiment, something to pick and poke at and then send home."