Dani's Page


One of the most important things about me is that although I have Rett Syndrome and can no longer talk, I still have plenty to say. Most folks think that because I can't talk, I must not understand what they're saying, or that I must be deaf, and so they shout at me. What's frustrating for me is that they're the ones who don't understand!

My mom says that I have a pure spirit, and she tells me that I'm an angel sent to teach everybody what life is really all about.

To describe me to someone who doesn't know me is difficult. Like all girls with this weird syndrome, and only girls get it, I have involuntary hand movements. Sometimes I wring my hands, sometimes I clap, and sometimes it looks like I'm trying to wash them. I'm not, it's just something that happens. I also have a unique movement. I cover my mouth with my right hand and flick the fingers of my left hand on my shoulder. I can't help that, but I can use my left hand in another way, too, a way that makes a lot more sense. I can use it to say "yes"!

The best thing about me is my spirit and my smile. I have a smile that my mom says knocks people out, and I have this indomitable spirit. One time I almost died because of an infection in my lungs, but I fought hard to live and well, here I am today.

A major thing about Rett that I definitely do not like are the seizures. They can be a real pain in the butt. I'll be out with my parents or even just watching TV, and the nasty things just take over. When I have them, I don't jerk around like you might expect. Instead, I feel like I'm losing time, like I have a blank space in my memory.

When I was a little girl, I really liked school. But as the Rett Syndrome started taking over, people thought that I must have Cerebral Palsy. They just didn't know, but while they were trying to figure me out, and while I was losing a lot of skills because of the Rett's, they moved me all over the place. I only spent one year in "regular classes". I wish that I were there all the time. Isn't that a strange expression, "regular classes"? Anyway, nobody seemed to know what to do with me, and as a result, I started to hate school.

Luckily, the puzzle was finally solved, and I learned that I had Rett Syndrome.I also got a great teacher named Hope. (Isn't hope a wonderful name for a teacher?) I wish that she could have stayed with me forever, because when she moved away, I really took it hard. Now I have a home teacher who comes twice a week. We read and do a lot of stuff together.

I've noticed that kids and adults look funny at me when I go out. This makes my mom furious. Sometimes I lower my head and don't look at them, and other times I look them right in the eye and smile. That really gets them. Stops them dead in their tracks and they look away ashamed. I really think that they just don't understand, not that they're trying to be mean. I wish that everybody understood what it's like for me. Maybe if you tell your friends, they'll tell theirs, and who knows, the ball might keep rolling and getting bigger and bigger!

I have a friend named Lauri, and before she moved, we used to have a blast together. My mom would leave money and Lauri would order pizza for us, and we would stay up all night and watch movies. I like love-stories and horror movies. My favorite movies are the ones about angels, though. Lauri thinks I'm an angel, too.

I'd have to say that my very best friend is my mom. We do everything together. Go out to eat, go shopping, to the movies and stuff like that. I really like it when she puts make-up on me. My mom treats me just like nothing is wrong with me, she even yells at me sometimes when I won't cooperate with her. I just laugh at her. What I love the most is when we cuddle together.

The next time you see someone in a wheelchair, remember this lesson. Remember that she (or he, of course),is whole, just like you. Remember that she has thoughts and feelings and dreams and frustrations, just like you. And remember that if she can't talk, like me, it doesn't mean that she doesn't have anything to say.

Thanks for visiting, Dani


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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: April 20, 2006