All proceeds raised will go to the CYSTIC FIBROSIS FOUNDATION. We are currently in the process of making KARLY'S KAUSE a non profit organization. We will be planning different events through out the year, we are also in the process of forming a committee, if interested in helping in any way, please contact Anita at nodita77@yahoo.com. Although there is no cure, they have made great progress over r
ecent years to help with making CF more managable and the quality of life greater for those affected. Karly was diagnosed in utero with CYSTIC FIBROSIS. They noticed on a routine sonogram, a blockage in her bowel, which red flagged them for either CF or Down Syndrome. After extensive testing it came back conclusive at 26 weeks that she did in fact have CF. While waiting for the test to come back conclusive, they started genetic counceling and because there was not a family history of CF, and it's genetic, they assumed she had Down Syndrome. The genetic councelor told us to be thankful that it wasn't CF because all that was, was a death warrent. Two weeks later, it came back conclusive for CF. I have said from day one, "I am going to do everything in my power for her not to be a statistic, she will be one that writes a book!"
As a parent, some days I feel helpless and everyday I wish I was the one going through it, instead of her. I decided instead of dwelling on the negative, to start KARLY'S KAUSE and turn this unfortunate situation into something positive. I truely believe we were chosen to be Karly's parents for a reason. My goal is to keep Karly healthy until a cure is found! One thing I stress, we don't want people feeling sorry for us because we are extremely blessed to be her parents. We may have more challenges then most but by creating KARLY'S KAUSE, we are hoping something positive comes out of this unfortunate situation. When we heard CYSTIC FIBROSIS, we were clueless about the disease. What is CYSTIC FIBROSIS? CYSTIC FIBROSIS (CF) is a life-shortening inherited disease that affects the way in which salt and water move into and out of the body's cells. The most important effects of this problem are in the lungs and the digestive system (especially the pancreas), which thick mucus blocks the small tubes and ducts. The lung problem can lead to progressive blockage, infection, and lung damage, and even death if there is too much damage, while the pancreatic blockage causes poor digestion and poor absorbtion of food, leading to poor growth and under-nutrition. Most parts of the body that make mucus are also affected, including the reproductive organs. The list of body parts affected by CF can seem overwelmingly long. But CF DOES NOT affect the brain and nervous system. CF in an inherited disease that is present from birth. Although it is inherited, the parents of a child with CF do not have CF, and most often there is no history of it in the family. We all have two CF genes that determine whether or not we have CF. Both of these genes need to be abnormal for us to have CF, and CF is inherited by receiving one abnormal CF gene from each parent. CF is the most commonly inherited profoundly life-shortening disease, affecting 1 in every 2500 babies born. One in every 25 people carry a mutation of the CF gene.
-CYSTIC FIBROSIS, third addition- David M. Orenstein
