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Kasey Seymour

Kasey Seymour

I have struggled with CF my entire life. I was diagnosed with CF when I was 4 and a half years old at Johns Hopkins. Like most CFers I have been in and out of the hospital more times than I can count, my drug list is as long as my arm, and IV antibiotics became as predictable as the change in seasons. After years of battling the disease I was given a second chance at life when I received a double lung transplant in June 2016. Since my transplant my lung function has been higher than I ever thought it could be, and two years after my transplant I was able to marry my best friend! Although my wedding is a day I will never forget, it also taught me that transplant is not a cure. The week of my wedding my lung function fell over 50%, and stopped my life in its tracks like it has so many times before. Since my wedding I have been working hard to regain it, and even know I am not there yet I know I will be. Although I still struggle with CF and transplant, I treasure everyday and am grateful for my family and friends, my doctors and nurses, the CF foundation and my donor. They are the reason that I am alive today.

Even though I struggled with my health this year the hardest thing CF threw at me was the loss of a friend. Despite the drugs and other treatments that are now available they are not enough to save us all. In December I lost my friend, Lea, to this horrible disease. Lea and I have known each other for years and have always been there for each other when one was going through a rough time. There are no words to describe the pain I feel not only losing a friend, but also knowing that I have the same disease that took her. Lea fought CF with everything she had, she was an amazing leader in the CF community, but she was an even more amazing friend. I am heartbroken she is gone but I know her spirit will live on with all those that loved her. She fought to raise awareness of CF and work towards a cure, and now the best way to honor her memory is to make sure that her dream comes true!

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