Who are you? What is it like to be you from day to day?
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For talking about how it feels to be a kid with bladder extrophy and associated disorders, and how it feels to be their parent or sibling. In our own words and for each other.
For talking about how it feels to be a kid with bladder extrophy and associated disorders, and how it feels to be their parent or sibling. In our own words and for each other.
3 comments:
I am Nathan. I'm 9 years old and I have bladder exstrophy. I am telling my story to my mom so she can type and spell for me. Most of the time, I try not to think about my bladder and I just try to be like everyone else. I have to go to the bathroom a lot. I always know where the bathrooms are everywhere I go.
We got a new trampoline in our backyard this year and I know how to do some awesome flips. I play soccer and I'm pretty good, but I'm not sure if I like it that much. My dad loves soccer so I'm trying it for a while. I like to play basketball in the driveway and ride bikes with my friends. I love to swim. I taught myself how to swim all by myself a couple of summers ago. This year I'm allowed to go to our town's pool without a parent and my mom lets me ride my bike over there sometimes.
My favorite things are my Nintendo DS Lite that I got for my birthday and my Ipod that I got for finishing a long tutoring class. I got my step-sister's used Ipod because Mom said she thinks it's crazy to buy an Ipod for a 9 year-old. I really wanted one though - and I worked really hard in that class. I don't really care that it isn't new. I like Webkins, Pokemon cards and Star Wars Legos.
I start the 4th grade in a couple of weeks. I'll be happy to see some of my friends, but mostly I'd rather just have more summer. Sometimes school is hard for me and sometimes it's OK. Last year was not great, but I'm hoping for a better year in 4th.
I have a 16 year-old stepsister, a 7 year-old sister, and an almost 2 year-old brother. He's fun to play with lately. My sisters are both pains, but sometimes they're OK. When my little sister and I can't find anyone else to play with we can play with each other. She's all right, but she talks too much and that irritates me.
I guess mostly I'm just a normal kid. I do the same things as all my friends except my Dad hasn't taught me how to mow the lawn yet. I think I have to go to the doctor more than my friends, but I almost never get sick. The one thing I really want is to not have to go to the doctor and to be like everyone else. Mostly, I am just like everyone else.
My name is Dan and I am 17 years old. I am currently going through my Senior Year in High School.
I play many sports such as Football, Wrestling, Baseball, and Track. I am very active and I am hoping to write more later about how I live with Bladder Exstrophy with and\ Epispadias.
My name is Stefan.
Well here is the basics about me. I am 14 with Cloacal exstrophy( a type of Bladder exstrophy). I am good at Fencing, Swords, Tae-kwon-do, and extreme Wisdom. I would like to help kids with exstrophies get through their hardships.
I do not know if you know about this but there is a camp I've been going to for four years for people with exstrophies. It is known as the UOA or United Ostomy Association. The link for their website is http://www.uoaa.org/
Kids may want to check out the UOA Discussion Boards. I am always on and helping others. You can meet people with what you have on there.
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