I am writing to ask for your help. I have once again this year signed up to participate in GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis, which is the Cystic Fibrosis Foundation’s annual, nationwide walk. This cause is extremely close to us because my daughter, Madison, was diagnosed with cystic fibrosis at birth.
On the outside Madison looks like a very healthy young lady, but what most people do not realize is that on the inside she is battling a very serious disease every day. Cystic fibrosis is a life shortening, genetic disease for which there is no cure. It is a disease that mostly affects your digestive system and lungs. There is an enormous amount of work that goes into having CF not only for the patient, but for the entire family. Madison takes about 12 different medications daily, which includes 20 pills to help her with digestion and also 2 breathing/ vest treatments. Madison currently spends between 1 to 2 hours daily doing her vest treatment in order to loosen the thick and sticky mucus that is in her lungs.
This may seem like a lot for a year 17 year old to do on a daily basis, but Madison has been doing all of this since she was 2 weeks old so for her it is just second nature. One of the hardest things about having CF is that Madison works so hard every day to try to stay healthy, but in time the progression of the disease is inevitable. As time goes on medications will be added to her daily routine and her treatments times will continue to increase. Each year Madison’s lungs continue to get a little worse than the previous year; her airways get a little thicker and she continues to trap more air in her lungs than she did the year before. This in turn makes it harder for her to breath.
The Cystic Fibrosis Foundation has made remarkably progress this year in finding a cure for CF. For the first time in history they have developed a drug that targets the underlying cause of CF instead of just treating the symptoms of the disease. This medication is a “game changer” and is going to make CF a disease that you will live with instead of a disease that you die from. Unfortunately, this drug is only effective in 4% of the population of CF sufferers and Madison is not one of them. The mutations that she has are more complex, but we are extremely optimistic that in time they will develop a drug that will benefit her.
I will be walking on May 20th in Williamsville, NY with a large group of family and friends in honor of Madison. Any help that you could give would be greatly appreciated.
I am writing to ask for your help. I have once again this year signed up to participate in GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis, which is the Cystic Fibrosis Foundation’s annual, nationwide walk. This cause is extremely close to us because my dear friend, Madison, was diagnosed with cystic fibrosis at birth.