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Christy Clow
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Christy Clow

I am the mother of a very sassy 7 yr old named Elizabeth.  She is fashion conscious, loves to bake and makes friends everywhere she goes. She also has Cystic Fibrosis.  CF is 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.  Elizabeth is one of the very luckiest to take advantage of new treatments that have kept her symptom free for now.  This comes at a cost however, both financially and physically.  She takes a course of oral and nebulized medicines daily that cost around $35,000 a month and visits her care team quarterly for checkups.  She also does twice daily physical therapy for 30 minutes each session.  This is because she has been so healthy.  It is not uncommon for a child with CF to have persistent infections requiring additional hours of therapy and aggressive antibiotics often requiring 2 week hospitalizations to run IV antibiotics. 
 
Thanks to the hard work of many people before us Elizabeth has not been hospitalized in 6 years, is the same height and weight as her twin brother without CF and has not had to scale back her activities because of her disease. We are SO GRATEFUL!  However not everyone with CF is sharing in our success.  Many people already have advanced lung disease and still others are not able to benefit because of their genetic type of CF.  Elizabeth’s treatment is not a cure!  She requires daily diligence to her therapies to maintain this success. 
 
The CF Foundation ensures that the movement toward a cure continues.  They also work tirelessly to advocate our lawmakers to protect everyone's access to quality, affordable healthcare.  They provide assistance to navigate the insurance system and coordinate the care centers to make sure everyone receives the best possible care.  They are a model for other foundations on how to turn a fatal childhood disease into a chronic condition in many cases.  I don’t even like to imagine where we would be without them.  We there for support them in any way we can.  I lead the volunteer advocacy for IL.  We all participate in fundraising of course.  Elizabeth has now started volunteering for research efforts to keep the developments moving forward.  Some of these involve uncomfortable testing and tons of blood draws.  I have said to her after some tearful moments that you don’t have to participate in these test. She has told me every time that she really wants to keep going because she knows it will help other little kids.  It is a pretty big sacrifice for a 7 yr old to make.  I hope you will support her efforts as well. Your financial donation, volunteered time, and response to advocacy alerts are all changing our lives and many others like ours for the better every day!  We can thank you enough and will be forever grateful to you.

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