www.whyville.net Jun 12, 2011 Weekly Issue

Times Writer

My Sister

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You've probably never heard of it. It keeps it's victims (mostly) silent. It disables them at a young age. It's so unfair, sometimes it's hard to deal with. The families of it's victims have to deal with the every day struggles of this.

It's called Rett Syndrome, and my beautiful 22 year old sister Kelli, has it.

Most cases of this disease are found when the child is very young. Normally, girls have it. The chances of a boy having it and surviving is very rare. This is because there is a defect on the X chromosome in the child. Females have two X chromosomes, meaning that they still have one more effective one to survive. Males however, have an X and Y chromosome; a defect on the X will kill the child. Most Rett Syndrome boys are still born, miscarried, or die at a very young age. This disease affects around 1 out of 10,000 kids. It can also run in families, and certain geographical areas, such as Norway, Sweden, and Italy. No one is sure why, though.

Rett Syndrome is a developmental reversed disease - in other words, when the child should be walking, they may just be learning to crawl, or sit up. Normally, they are diagnosed after the 6-18 month mark. This is because the syndrome doesn't take effect immediately. Symptoms can include mouthing (hitting the hand against the mouth repeatedly), seizures, drooling, abnormal breathing, and abnormal hand functions.

Kelli was diagnosed when she was three years old. At first, my parents were told it was autism, then cerebral palsy. This is because when my parents were searching for a prognosis, Rett Syndrome was hardly known. There were only about 100 recorded cases of it in the history of the world back then. Of course, more information about the disease has been brought to light.

My sister has seizures, normally around 6 or 7 at night. They are pretty random, and we never know when they'll occur. When this happens, we have to give her a liquid called Valium that makes her fall asleep, ending the seizure. She takes two different types of pills twice everyday, two different liquids twice a day, and needs PediaSure (a nourishment supplement) every day. She also can't walk, feed herself, change the channel, or move herself around to get more comfortable. Oh, and she snores pretty loudly, too.

I've grown up around Rett Syndrome, so when people say, "Oh that's horrible! You must feel so sad," I always stop them before they finish their mini rant about nothing. Yes, I feel bad that she can't live a 'normal' life, but I wouldn't want to change her, even if there was a cure for Rett Syndrome. She's not in pain. She's the happiest person you could ever meet, and her smile can brighten a room at anytime. Her spontaneous screams and laugh can put anyone in a good mood. I love being around her, because she's one of the best people ever. She inspires me everyday. Plus, without her, I wouldn't want to know what I'd be like today.

I love my sister.

Author's Note: Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503/


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