My Great Strides Story
First and foremost, I LOVE my life. I’m sharing a small portion of my experience to help others understand better what having cystic fibrosis (CF) means. It’s the only life I’ve ever known and having CF has helped shape me into the man I’ve become today. All that being said, I would never wish CF on anyone.
For the first three months of my life, I was having trouble gaining weight, couldn’t keep down milk, and was in a steady decline in health. The doctors were dumbfounded as to what was wrong with me and I was diagnosed with failure to thrive. Thankfully, an offhand remark from my parents triggered their med school memory and they ran a genetic test. I had cystic fibrosis. One transfusion, pancreatic enzymes, and some weight gain had me on my way in the world.
Every day, I had several hours of breathing treatments, chest physical therapy, and a regimented schedule to keep myself healthy. But that was all I knew, so it felt normal. I never truly felt hampered by CF until I was in my late teens, as my lung function steadily declined to under 40%. By the age of 19, I was being seen at a lung transplant center (Tampa General) and was quickly listed for a new pair of lungs. After a false alarm, ten days into waiting, it took another 18 months before I had my second call in for a transplant. Thankfully, this one was viable and I was given more time in this world.
As of writing this, it’s been almost twelve years since that day. My CF has continued to progress, but I still live a happy, (relatively) healthy life. Complications of transplant have been the largest issue, but I’m super happy to be here and to get to live life with you all.
My family has been walking for s cure for CF for over three decades now. Please donate to the CFF Great Strides Walk to help other people live longer, happier lives!
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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