My name is Alli Hile and I have a twin sister named Abbi. I am 13 years old and I have Cystic Fibrosis. Abbi does not. Thank you for what you are doing to raise money for this disease. I would like to tell you about when Abbi and I were born. We were born on January 5, 2001. We appeared to be very healthy babies. But, when Abbi and I were about 15 hours old, I started to have some trouble. Thanks to our nighttime care nurse (my mom says she is my angel), I was moved to Nationwide Children's Hospital and received emergency surgery. I was diagnosed with Short Bowel Syndrome and ultimately Cystic Fibrosis. I spent 116 days in the hospital - that time. Cystic fibrosis is a complex, genetic disease that affects about 30,000 children and adults in the United States. Today, the median age of survival for an individual with CF extends into the late 30s. CF is caused by a defective gene that causes the body to produce abnormally thick, sticky mucus, which clogs the airways, leading to chronic lung infections and impaired digestion. Currently there is no cure for Cystic Fibrosis. In the spring of 2008, my lung infections became really bad & resulted in lung surgery to remove the entire middle lobe of my right lung. After that I only had to go to check ups and a few sinus surgeries for the next 5 years. Then, I got pretty sick again this past fall. I had to go back into the hospital for 8 days to get IV antibiotics and lots of therapy. Right now, I am still fighting some lung infections cause CF get worse as I get older. It stinks! I am a competitive dancer and I hate when I am not feeling well and have to take it easy. I have worked really have since I was 3 to be on the competition team, and lots of time CF gets in my way. I do not look ill. Most of the time I feel healthy, happy and strong. But I have a war going on inside my body. As new symptoms appear and old ones become a little worse, my medicine shelf becomes fuller and fuller. I take approximately 30 pills a day, do chest therapy and breathing treatments 3 or 4 times a day and and I have to eat 3,000 calories a day. It's exhausting doing all that and wanting desperately to be a "normal" teenager. I used to ask my mom all the time, when would my CF go away? I know now that it won't. But, I also know that the treatments are getting better and better every year, thanks to the CF Foundation. My most important job right now is doing my best to stay healthy, so that I can take advantage of new treatments. And, that's my story.
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Alli is the daughter of one of the CF Foundation
Board Members, Jill Hile.
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