Lets make CF stand for Cure Found, in my lifetime.
I am sure sometime in your life you have witnessed this person. Young and beautiful with eyes that sparkle like the stars with a smile to match. So outgoing and ambitious it becomes infectious. The one person who would never judge a soul no matter what they have done. Someone who will always stand up for what they believe in. Who will try and be the best at everything they do. The one who you cannot help love, but at times you may also hate. You would do anything to be this person for a day. Walk in their shoes. See what it was like to live the life they seem to lead. What would you do if you ever got the chance to be that person? What if that life isn’t all you thought it would be? What if that person was dying? What if he or she was born with a chronic illness? What if everyday life for them was a complete struggle? Have you ever thought maybe that one person you want to be…would do anything to be you?
My name is Miranda Porche, and I am one of those people. I am that person at first glance everyone wishes to be. The one that is never afraid to be herself, never without a giant smile and a warm greeting. I am the girl far wiser than her years. . I will be the one friend that will never judge. That will have the best advice alone with the biggest hug if you are having a bad day. I am not afraid to dance like there is no tomorrow in the middle of wherever I find myself and put on a show. With the confidant walk of a super model, I can walk into a room and change the entire atmosphere. From the outside I look perfect as a matter of fact I have been told I give off the presence of an angel. The people, who judge me too quickly, have me as this picture perfect 17 year old in their head. What they do not know about me is I was born with Cystic Fibrosis. Cystic Fibrosis is a genetic disorder, a deadly genetic disorder. Not even 50 years ago, it was very rare for a child to live long enough to attend kindergarten. Now as of 2008, the life expectancy of a child with CF is around mid-thirties. As of Tuesday January 31st 2012 there is new hope in the CF community with a new drug that targets the root cause of the disease. This medication is not for every patient, as there are thousands of different mutations of the gene that causes Cystic Fibrosis. This drug targets only one of the mutations. None the less it is still not a cure. I hope for brighter future for patients to come.
For those of you who may not know, Cystic Fibrosis causes thick sticky mucus to build up and clog some of the organs on the body. It mostly affects the lungs and pancreas. Daily medications, antibiotics, breathing treatments, and regular exercise are some of the only things we can do to try and maintain health for as long as possible. Hospitalizations happen regularly and become a lot more strenuous the older patients get. Viruses and bacteria getting attached to the sticky mucus in the lungs cause scaring and decay which eventually leads to the need for a double lung transplant. Dozens and dozens of other side effects as well, if I sat here and named them all it would take just way to much time.
I recently lost one of my closest friends to Cystic Fibrosis. I now am in the works of writting a book with his father, as well as public speaking. My goal in life is to create my own legacy. I hope to start that off here.