Hi! My name is Karlie. I am seven years old, and I have a disease called Cystic Fibrosis. CF is a genetic disease, but until I was diagnosed, my mom and dad didn't even know what it was. A defective gene, that comes from both the mother and father, causes the body to produce an abnormally thick, sticky mucus. This abnormal mucus leads to chronic and life threatening lung infections and impairs digestion.
The doctors diagnosed me at three months old. I was losing weight even though I ate a lot. The doctors didn't know what was wrong at first. Then my grandma told mom to tell the doctor I tasted salty. She knew it was important, but didn't know why. The doctor said it was a sign of Cystic Fibrosis, but didn't think that was what was wrong, because mom didn't know of any family history, but they tested for it anyway. I didn't like the test. They put this stuff on my arm to make me sweat and then they held something over it for 20 minutes! I had to be really still, not fun for a baby. Anyway, it takes about 15 minutes for us to get from the hospital back to home. When we got home, our phone was ringing and it was the doctor. That was fast. He said the normal sweat chloride test is 40 and mine was 114. So this began my trips to the doctor.
I have two inhalers, Albuterol and Flovent, which I take two puffs of each, two times a day. It increases to three or four times when I get sick. Then there is my neb's treatment, called pulmozyme, once a day, but it takes about 10 minutes. When I get sick I also have a neb called Tobra added to my treatments. Here's some cool news. My mom used to have to pound on my back, stomach, and sides for about 1/2 hour per day to loosen the mucus from my lungs. Now I got this cool vest that wraps around me and shakes me. It's really cool. As soon as I get a picture of it I will put it up. This vest costs $15,000. Praise God for Childrens Special Health Care Services and good insurance or I wouldn't have been able to get it. I also have to take four pills every time I eat to help me digest my food. People joke and say, "Well, you'll never have a weight problem," but I do have a weight problem. I can't gain any. This is dangerous, because I get sick and don't get the calories I need from food to fight off the infections. I've been in the hospital about 4 times because I keep getting colds and they turn into pneumonia.
Currently there is no cure for Cystic Fibrosis, but they are making new discoveries every day. If you would like to learn more about CF, you can visit their website at www.cff.org.
Life is good. I am in Kindergarten this year, and my teachers are wonderful. The students are really great too. They get used to my coughing and have learned to deal with it.
My mom wrote in to the Make-A-Wish Foundation and asked them to make me a Barbie Princess for a day so we have been really busy. They are all so wonderful and I can't believe all the things they are doing for me. This has been really exciting. Also I would like to thank all the people who are donating things so I can have this wonderful day. It will be on March 13,2005 at the Frauenthal. I hope to see everyone there. People are so wonderful. For more info on the foundation visit www.wishmich.org.
More fun stuff. The addition to our house is finally finished. My bedroom is reall cool. This lady named Jinny Keegan painted a Mural on the wall and she didn't stop there. She also had someone make me a bed and decorated my whole room. It is awesome, cool. You can see it and other designs at www.gingydesigns.com.
My mom works for a chiropractor. He is really nice and I go get adjusted too. My mom is going to start getting me some massages too. She says it will help to imporve my blood flow and hopefully my lungs too. Dr. Wallace is really great.
My dad works at Shape Corp. and is president of the motorcycle club here and we are going to have a very busy summer. For the first time the club is going to have a Pro-am Motorcross race. It will be lots of fun. I like to ride motorcycles and go really fast. You can get the list of events at www.muskegonmotorcycleclub.com Hope to see you there.
I have a page with some pictures of me. Click here to see it. Also I now have an e-mail address if you would like to write to me. It's Karbar98@comcast.net. I would love to hear from you.
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The Official Cystic Fibrosis Website
