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My Experience With Rett Syndrome

Although intellectually and conversationally the doors have been unlocked, there are still so many things I struggle with. Even typing this speech has taken days to get this far and will take several days more to complete, typing literally one letter at a time with my right pointer finger.
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There are so many things I could share with the world about myself, but the volumes of information I have to share would keep us here until they discover a treatment for Rett Syndrome. What I can do now is give you a glimpse of the tip of the iceberg.

Think of yourself in a cage in a room full of people, and the cage is soundproof. You feel uncomfortable, maybe thirsty, or hungry, in need of some assistance or wanting to ask a question. Think about how frustrated you are when nobody hears. No matter how loudly you shout your requests inside your cage, none of the people in the room with you can hear. Now imagine instead of a cage you are trapped in, it is your own body. That is my life -- an intelligent mind imprisoned in my body.

Until a few years ago, when I started typing and unlocked the door to communication, I lived with an incredible secret: I am smart! Not just average smart; I'm really pretty smart. That is the No. 1 thing I wish people would realize about me. It is quite embarrassing when I am with my peers or anywhere in public and I start talking and scripting about Peter Pan and Tinkerbell, when that is not what I am thinking at all. Those are just words I have learned so well from watching thousands of hours of Disney movies, which I watched only because I didn't have the language to ask for anything else. When I started school at the Emerson Academy a few years ago, it was a wake-up call. At first it was terrifying to have expectations placed on me. But after a period of adjustment, I came to realize what a positive thing it was. My teacher and my aide holding me accountable for my behavior and raising academic expectations showed me that people besides my family believed in my intellect and abilities, which cultivated motivation within me.

Although intellectually and conversationally the doors have been unlocked, there are still so many things I struggle with. Even typing this speech has taken days to get this far and will take several days more to complete, typing literally one letter at a time with my right pointer finger. It is incredibly hard to meet people and make friends that aren't circumstantial, and even if I could easily make friends, making plans and going out is equally difficult. I would love to go to see movies with my friends, but I am afraid I won't be able to control my sensory impulse to talk, laugh, or stand up; on family vacations to Mexico, I want to go dancing at the clubs with my brother and sister, but the loud music and large crowd will be too over-stimulating and overwhelming. One of my favorite school field trips is going to the opera, but my enjoyment of the music is overshadowed by the anxiety I feel while trying to keep my behavior in check.

At home I feel most comfortable, but even there I encounter huge obstacles. Huge obstacles like not being able to brush my own teeth because of my difficulties in fine motor skills. Or not being able to check my email by myself without the verbal prompt I need to initiate my movements. Even getting dressed can be quite an ordeal; to make things easier, my wardrobe consists mainly of pull on sweatpants and slip on shoes. It would be amazing to wear cute skinny jeans every day but buttons and zippers are impossible. I love my family more than anything in the world, but I don't want to live at home forever. How am going to live independently when I can't do my own laundry without verbal prompts from someone for every single movement? I hate having to burden others with driving me around; not that I am interested in driving myself, but to ride the bus by myself and read a book -- that would really be awesome.

I once wrote a blog answering the question of whether or not I believe in luck. Here is what I said:

I don't think I believe in luck. I think the word "luck" can be an accurate adjective describing some things that happen. But as far as luck being a predetermining factor, I think that is a cop-out.

Like me, for example. I was born with a genetic disorder. Unlucky. But, it is an a-typical form. That's lucky. Am I as a person lucky or unlucky? If I believed I was unlucky there would be no point in trying to overcome anything. So maybe the idea of luck is really just how we choose to view the world.

I do know how fortunate I've been in having an amazing support team that is constantly growing. To see how many people here are supporting our cause is encouraging and gives me hope. There are so many girls who are worse off than I am, and the more research is funded, the sooner we may be able to lead the lives we dream of.

For more information on the Valner family's charity and their annual gala, go here. For more information on Rett Syndrome, go here. To read more from Gaby, go here.