When my god-daughter Delaney was 15 days old, she was diagnosed Cystic Fibrosis. Cystic Fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. Because of the 20 pills (about 30,000 to date), 2 breathing medications, and the Chest Physical Therapy (CPT) that she receives each day and rounds of antibiotics (as needed) Delaney is doing great.
But all of this was made possible because of the research that has been funded by the Cystic Fibrosis Foundation. Funding that came because 25 years ago, someone like you cared enough to get involved!
Even with the great strides that have been made in Cystic Fibrosis we are still sadly, losing a life everyday to this disease. Sadly, many of these lives have been children and young adults who never had the chance to reach their 20s. Their lives were cut much too short. Thanks to current treatments, the life expectancy of a child born today is 37 years. Although this is a wonderful improvement over the prognosis of a CF patient 25 years ago, it is still not enough.
Below is a Facebook post from the mother of a child with Cystic Fibrosis. I think it expresses their struggle better than I ever could.
“I HATE Cystic Fibrosis. As the days go on with all these treatments it just gets harder and harder to get Caylee to sit still for several hours a day. She's all tied down with a mask on her face taking 3 inhaled medications and strapped to a vest that is shaking her body. Tell me how your child would feel? It's not fair. I want her to be cured more than anything in the world. I just don't think some people realize what CF is and how it affects our daily lives. It's so hard on her but me too. It's not going away... Ever. CF will always be here unless people donate so researchers can find a cure. I've had enough of this disease running our lives.”
We cannot stop working until we have made the greatest stride of them all and Delaney, Caylee and the 70,000 others with CF has the same life expectancy of any child.
We will be successful in our mission to find a cure for Cystic Fibrosis because of caring people like you behind our passionate fight.
Help us make sure that CF stands for “Cure Found”!
On behalf of everyone whose life is touched by this disease… thank you.
To learn more about Delaney and her daily battle with cystic fibrosis, please view her video at: https://www.dropbox.com/s/ub1hy2d3f5dfi1w/One%20More%20To%20Mine%20KH.mov