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    Posted February 28, 2014 by
    grams63
    Location
    Michigan
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    HAVE YOU HEARD OF RETT SYNDROME/

     
    Do you know what it's like to have a disorder that is Autism, Parkinson's disease, Cerebral Palsy, Anxiety disorders and Epilepsy, all rolled into one illness? My name is Naomi and I'm 10-1/2 years old. At first glance you might think I'm a typical happy little girl who loves to play with her little brother Logan. That's at first glance. But I was born with a rare and devastating neurodevelopmental disorder that most people have never heard of. It's called Rett syndrome.

    Every 2 hours a girl is born with Rett syndrome. Rett almost always affects girls. We usually appear quite normal at birth and for the first 6 to 18 months of our lives, but then we begin to lose the ability to speak, walk and purposefully use our hands. I'm one of the lucky ones, though, because I can walk some, but I can't go up or down stairs. I have seizures but I don't let it get me down. I love to go to school and music class, where I get to see my friends. I go five days for two hours each day. I have a new eye gaze computer to help me at school and at home. I love all of my teachers and therapy workers. They all work really hard to help me. When I come home from school I am real tired, so my mom makes me take a nap before dinner. I love to watch Barney, and football on TV makes me laugh. I love to watch the deer. I also love my dog "Molly". I have a great time playing with my little brother Logan. But I really want to get better, and soon, but to do that I, and all of the other Rett kids like me, need your help because right now there is no cure.

    February 28, 2014 is World Rare Disease Day. On that day there will be activities across the U.S. and around the world to raise awareness of rare diseases and the special challenges we face every day. Rare diseases affect the entire family. All of us know someone with a rare disease. I hope you will go to www.rarediseaseday.us to read about Rare Disease Day activities in the U.S. If you would like to know more about Rett syndrome, visit www.rettsyndrome.org or call toll free to (800) 818-7388. One day, when there is a cure, I WILL have a voice but for now, my eyes say it all.

    Your help is my hope!

    Thanks,

    Naomi

    "Rett syndrome has taken away the future that many parents have dreamed for their daughters...IRSF is working to give it back!"

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