Cystic Fibrosis Singer
Hello...my name is Kira Taylor.
I am a country and pop singer who is also a Cystic Fibrosis Warrior who has raised money for the Cystic Fibrosis Foundation as well as supported numerous anti-bullying awareness programs. I am almost 15 years old and am currently taking courses on Florida Virtual (FLVS). I am a survivor and am dedicated to anti-bully awareness. My love of music has gotten the attention of a few people here and there. I just want everyone to know that when I sing and dance I do not even think about the Cystic Fibrosis (CF) or what it is truly about. I believe that my warrior spirit has made me healthier. I know that singing has at least made me feel normal because I do not think about the treatments and pills that keep me healthy.
When I was 8 months old my mom and dad noticed that my head was bulging. The nurse at the emergency room told my parents that it was called bulging fontanels. I was immediately admitted to the hospital and sent to surgery ASAP. The doctor who I will always thank - Dr. Haynes at MUSC a pediatric neurosurgeon placed my shunt. I am so lucky that I have not had any other problems with my brain, but I will always have hydrocephalus. It is just that it is no longer deadly. The only thing that I really hate about the shunt is that if you look on the left side of my neck you will see my tubing going all the way down my neck. One month later my parents noticed that I was still very sick and not gaining any weight. They then took me to my pediatrician who then tested me for CF. Honestly, when I got back my results mom and dad told me that they both cried. Lucky for me I did not see this or really know what CF was or the struggles that I would then go through.
Cystic Fibrosis is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF (http://www.cff.org/aboutcf/). From the time that I was one year old until I turned six years old I was in the hospital at least twice a year. These hospital stays would range in time from 1-2 weeks. Additionally, I would get to go home with a lovely picc line for an additional two weeks each time. A picc line is an IV that enters into a large vein that goes directly to the heart. This is where us CF'ers sometimes have to get those really expensive antibiotics. Also, I went through 3 very extensive sinus surgeries. Still, I have never thought that I was any different from any other child. Now this is where my story started turning a little better. Since the age of six years old after I recorded a video on you tube at https://www.youtube.com/watch?v=T7WnKjA3RVU I did not end up back in the hospital. I believe that music as far as dancing and singing has kept my lungs healthy.
I was asked to perform at The Great American NO BULL Challenge annual music benefit in Ohio on October 4, 2014. I am actually listed as one of the seven confirmed performers along with numerous other speakers. Here is the link if you want to check me out at http://www.nobullbenefit.org/. You would need to go to the second page, but there I am.
This trip is going to be expensive, but it is worth it. Please donate if you can because anything helps. Unfortunately, Cystic Fibrosis is a very expensive disease. Here is an article from 2003 that discusses the costs even back then being very expensive (http://www.ncbi.nlm.nih.gov/pubmed/13129414). Unfortunately, the cost has gone up and when if I ever qualify for Kalydeco is at this point $300,000 yearly (http://www.medpagetoday.com/Pulmonology/CysticFibrosis/42018).
The costs of this trip is going to run upwards of $8 000.00. Plus, I will have to buy new clothes to prepare me for the cold weather in Ohio. I know that this is going to be a cold trip, but I am willing to do it to give back to my art that has made my life rewarding. Please support my fundraiser.
If you do not want to give directly to my fundraiser, but would like to sponsor me through either donating gas cards, food cards, or hotel vouchers. This is a real dream but if I could one day get an RV to travel in it would really be helpful. Unfortunately, I cannot eat McDonald's food and stuff like that because of the CF.
