*I am Courtney Wade and I wrote this story awhile ago, then updated it two years ago when I was a 10-year-old girl. I'm happy that you're visiting my page on Band-Aides. Here are some of the things about my life that are pretty cool. Snow skiing, and snow tubing, and ice skating. That's in the winter, of course. In the summer I love the beach, except when I have sand on me for a long time. Then I simply have to take a bath! I'm so lucky because my family has a house at the beach. My favorite color is yellow and I love cats. I have a cat named Crissy. I love music, too, and that I can enjoy winter or summer!

*I have this strange medical problem called maple syrup urine disease. I know that it sounds like a stupid name so we call it msud instead, just its initials. Because of this disease, I am sick a lot, and that means two things. 

  1. One, I have to go visit doctors a bunch, although I guess that's not so bad since I love my doctors. 
  2. Two, though, is not so great, because I really hate needles...I'm scared of them. Luckily, I had a port for awhile so I did not have to get stuck a lot. (A port the top part of a skinny, skinny tube that's been inserted into a vein in my body. It didn't really hurt, and as I mentioned, I could get fluids through it without having to be stuck all the time).
*My doctor is really nice and she wants me to get well. She tries real hard to make me feel better, she always tells me the truth, and she doesn't treat me like a baby.

* For awhile I wasn't allowed to go to school, probably because I might have caught a lot of germs from other kids. I am in the fifth grade this year, though, and I DO get to go to school now. The port I used to have was removed, and I'm even taking gymnastics. I also take dance, and I love ballet and jazz. They are so much fun. Sometimes my disease makes me too tired to dance and as you might imagine, I do not like that. 

*I have a sister Jordan, and I help her with her homework sometimes. She is 12, and my brother, Michael, is 6. He is so mean to me, really annoying, following me around and bugging me all the time. If you have a brother, you'll know what I mean! My best friend is Brooke. We like pokemon and ice skating. I have other friends like Caroline and Sarah  and Jenna, but I don't get to spend the night at their houses because their moms are afraid I will get sick or eat the wrong thing. 

*I wish I were like my sister and could go where I want all the time. She gets to go to slumber parties and she is going to Disney World with her friend...and I can't. She gets to go to camp, too, and I don't. I cried a lot about that one. I don't get teased very much, but I get treated like a baby by kids younger than me because I am so small. That is a pain! 

*One of my doctors suggested that I get a special kind of button in my tummy. The button would connect my tummy to the outside of me, so that I could get extra food that way through a tiny tube. I figured that if I had one, I might grow as tall as Jordan, and I might even wear her clothes. Mommy didn't like the button idea, since she wanted me to be able to swim and play like everyone else, but I guess I really, really needed to have one, so, ta da, that's just what I did. With the g-tube (that's what it's really called) inserted into my stomach, I can now drink fluids and high Calorie foods without actually drinking them, if you know what I mean. They go directly from the container to my stomach...from the outside. The procedure was not at all fun, but guess what. Because of it I gained 12 pounds and grew 2 inches in 3 weeks. Now that's good!

*I don't like it when people whisper about me. I am not deaf. My grandparents are terrible about that. My hair was falling out and they whisper to people about it but I could hear. 

*My disease makes my head hurt really bad when I eat too much protein or when I'm sick. I puke a lot when I am sick, too, which is not a lot of fun, believe me. I really hate to do that. My friends know all about my disease, but very few other people do. Of course if you're interested in learning more, just click away! In the meantime, thanks again for visiting. I hope you learned that I'm a lot like other kids. This disease is not something you can catch from me, so don't worry about that, either.


*I thought you might be interested in some of the cool e-mail I've received from people who have visited my page. To begin with,  I have made an e-mail pal who has lupus, and we e-mail back and forth a lot. Since she gets stuck with needles like I do, we really understand each other. In fact, I was able to give her ideas about how to play nintendo with an IV in her hand! 

*I have also received mail from moms with sick, little kids. They ask me what things feel like, as if I'm the expert. It is so cool, and  I feel like I have made a bunch of kids feel better. I really like that, and I really like my story. One thing that's neat is that all my doctors go to the web site and read the stories. So do the kids at my old school. And everyone at dance, too. My school nurse tells sick students to read the stories. I'd like healthy kids to read them, too, so that they would know what it's like. Bet they wouldn't tease kids with medical problems if they knew how hard it is some of the time.

*I hope that you'll write to me, too, if you have a chance.  Courtney

*2002 update: I am in the 6th grade now, and guess what--I don't have a mediport OR a  g-tube anymore. I was in the hospital for just overnight last week and it was the first time in 2 years! 

More about this strange disease

To the frog ponds
To write to Courtney
To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004