| A Different Kind of Kid | ||||||||||||||||||||||||
| A Kid With Turner's Syndrome | ||||||||||||||||||||||||
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Hello there :-) ! I'm Amber Samantha, I am 12 years old and I have Turner's Syndrome. I know, you're saying "what's that ?" ! Well I am going to try and explain it to you. Turner's Syndrome is a fairly rare chromosomal abnomality which only girls can have. The main and most visible thing about TS is that girls who have it are short for their age. I am 12 and I am 4 ft 5 inches tall and weigh 60 pounds. I look like a girl who is about 9. Girls with TS can and do have a wide variety of other illnesses and conditions. Some of these can and do become extremely serious. TS does not kill you, but the other complications might. Some TS girls have such minor symptoms that the one and only thing is the shortness. They are the lucky ones. I have chronic ear and sinus infections. This has caused me to be slightly hard of hearing (HoH). In addition to this I have a slight hip problem, low blood sugar, low blood pressure and a type of anemia which I must take B-12 shots every month for the rest of my life. My most serious complication was a kidney problem. I had too many veins and arteries in and around my kidneys. Part of this problem was never full caught. When I was put on growth hormone (GH) it caused me to grow at a rate faster than my messed up kidney area could handle. The result was congestive heart failure (CHF). In August of this year I had a very serious operation to correct the problem. I was in the hospital almost a month. Even after I was released I was put on IV antibiotics and dialysis. I am now post-op 6 weeks and am doing just great. I am no longer taking antibiotics and have been taken off dialysis. My doctors tell us the operation was successful. They got about 90% of the problem (They ran out of time) and from this I will be able to lead a normal life. In the future they will be looking at some of my other problems - mainly the ear/sinus and HoH difficulties. I guess now it is back to more tests and probally an operation. It will be worth it just to not have the pain and discomfort and the further hearing loss that could happen. On the brighter side of this whole thing is that I do not have some of the learning problems which most TS people have (mostly in math & spatial relationships). I am homeschooled and am a TAG (Talented and Gifted) student. My IQ has been measured at between 142 and 154. I have never made a grade below an A and I do take advanced and special classes. Later on I will be giving you some links just in case you want to know more. I would suggest that if you visit these links that you have a parent there to help you with some of the great big, long words that may be there. If you want to ask me questions about TS I sure will be glad to talk with you about it. I am not shy !!! | |||||||||||||||||||||||
| My Favorite Chat Place | ||||||||||||||||||||||||
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I am a chatter. I love to talk and make friends all over the world. When I got on the computer almost 2 years ago I tried many web chat places and most were ok and some were just terrible. Then I go introduced to IRC (Internet Relay Chat) and from there I was hooked. There are many places to chat in IRC. I settled on a place called #irc4kids on the Undernet server. There I am always known as Starlite. In mid January (just before my kidney problem went nuts) I was at 11 years old made a channel operator in #irc4kids. Being a channel operator means that I am a supervisor in the channel and am sometimes the only operator there, except for the bots which help us run the channel. I am there to help you BUT if rules are broken I can and will remove you from the channel. Most of the kicks and bans are temporary. People who always break the rules or who break serious rules or who are over 19 and/or harrass, threaten or abuse people in the channel are banned forever. We want to keep #irc4kids a safe and enjoyable place for kids to chat and enjoy making friends. Yes, we are tough, but we do it for your own good. Above all I enjoy a good chat. I'll chat with anyone. Mostly I chat with people around my age or about 10-13. There are younger people in there and I especially make sure they hayve a good time and help them with learning irc. So come in sometime and visit #irc4kids. You will need special software to use irc. It is a small download and later I'll be giving you a web site to download my favorite - Mirc. So hope to see you there somtime :-) !!! | |||||||||||||||||||||||
| My Interests/Family/Boyfriend | ||||||||||||||||||||||||
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I collect old & valuable barbies, swim, garden, camp & fish - I love the computer and chatting. I am an outdoors person. I enjoy the spring and summer. If I am not at the coputer you will probally fing me in a swimming pool, at a campground or with a fishing rod in my hand. | In my family is my mom and my 10 year old brother, Brian. My dad died when I was about four of Leukemia. My mom has two jobs and works alot. We don't see her like I want. When she is at work my great uncle keeps us. This is his computer that I use. When he is out of town at work we stay with relatives in Alabama not far from my home in Mississippi. My uncle is the one who paid for all my medical treatments when some of them were refused by the insurance company and I will always be grateful to him. The computer I use is not exactly the kind you may find in a home. It is alot bigger. I is a DUAL processor 200 mhz Pentium-Pro, 3 hard drives, 21 inch monitor, 256 ram, #9 Imagine 128 with 8 mb vram, running Windows NT 4.0 (workstation and server). Last but not least is my boyfriend Nathan. I have known him since I was 6. He is 11 now and is my brother's best friend. I love him alot and I sure am glad that he has liked me all these years. Some people said that we met too early and that is something only you can decide. I got my boyfriend and I am keeping him.
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