I was diagnosed at birth and am the youngest of three girls, all with cystic fibrosis. Cystic fibrosis is a chronic and terminal illness. When I was born, the life expectancy was 15, due to research and science it is now 37-40 for people born when I was, and in the 60’s for those born with it today. I am living proof that fundraising and walks like the walk in May make a difference. When I was a baby, my mom used to have to give manual chest pt (or beatings as we so lovingly called them) to my sisters and I. Which was her hitting us in various key points around our chests to help move the thick mucus that gets stuck. Within the first five years of my life, technology changed. Doctors and scientists invented a machine called a thumper, and then the Vest. The vest is, well, a vest. You attach tubing to a machine, and it performs the chest pt, so it isn’t manual. It was life changing! And then within the last 10 years, they came out with a portable version. I remember getting it and just feeling such relief at being able to walk around and still do things without being chained to the wall. Not only has the research changed how treatments are done, but medications have changed too. About 6 years ago they released medication that targets the actual gene mutation directly to counteract the damage it does to the body. This medication is the closest thing to a cure that has ever been found. It saved my sister’s life. 

These walks, these fundraisers, they make a difference. My sisters and I are alive today because of them. We are being told for the first time in our lives that we should plan for retirement. It’s amazing and mind boggling to think that this is where we are now. But because of people willing to help and raise awareness, I’m able to do my treatments while running around with my 1-year-old. Something I never thought I’d be able to do. I just recently relocated to Minneapolis and I look forward to walking with you in May!