I am participating in a 10-week fundraising competition to see who can raise the most money for The Cystic Fibrosis Foundation. Besides the fun of unleashing my competitive spirit to forward the momentum of an amazing organization, I have additional motivation to give these next few weeks my all. My 7 yr old daughter, Eve, has a friend with CF. As we have gotten to know her friend, Elizabeth, and her family we have gotten a front-row seat in seeing what this disease looks like. If you are like I was prior to meeting Elizabeth you have heard of Cystic Fibrosis but may not know what it really is. Here is how the CF Foundation explains it…
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. Sixty years ago, children with CF usually did not live long enough to attend elementary school. Today, because of Foundation-supported research and care, the median survival age of people with CF is over 50. Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
What I have seen is a little girl, just like mine, who has been able to swallow handfuls of pills since well before I met her at 4 years old. She needs to take breaks twice a day for physical therapy and nebulized medicines. She spends so much time at Lurie Children’s Hospital for regular checkups that she can tell you how many fossil tiles are in the floor as you enter, which floors have the best kid “exhibits” like the fire truck or tree house, and of course where all the best snacks are. What really amazes me is that this is because she has not yet had complications of the disease. She was one of the lucky ones to start on some groundbreaking treatments at an early age which has given her the best chance at a “normal” life. Her family tells me stories of many other families they know that have not been as fortunate and endure long hospital stays and aggressive antibiotic treatments. Needless to say, I want the best for Elizabeth and all those with CF and therefore am motivated to do all I can to win this competition and help make CF stand for Cure Found!
I got a chance to try out the vest that Elizabeth uses twice a day for her physical therapy!