When my daughter was diagnosed with cystic fibrosis, our nurse looked at me and said, “Welcome to the family!” Although I wanted to punch her otoscope lights out at the time, I think I'm finally starting to understand what she meant 13 years later.
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My atypical cystic fibrosis led doctors to believe that my health issues had another cause. Members of the CF community welcomed me as one of their own and helped me to find the answer.
My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.
As I reflect on the 30th anniversary of Great Strides and my 35-year journey living with cystic fibrosis, I celebrate all the CF community has accomplished together and am thankful to be able to share my story as a 2018 National Ambassador.
With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
My husband and I spent our first weekend as parents contemplating the news that our new son had cystic fibrosis. Although we handled it in very different ways, we were ultimately able to overcome the initial shock, with an entire team to help us along the way.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
After my son was diagnosed with cystic fibrosis, I knew I wanted to do more to fight for a cure. That's when I decided to start Charleston Mom Prom, a Passion Fundraising event that has raised thousands of dollars for CF, while allowing us moms to have a night on the town.
Although we may have had nine months to prepare, getting our daughter's cystic fibrosis diagnosis before she was born came with a unique set of challenges.
Although my wife, Wendy, passed away eight years ago, I continue to raise funds for cystic fibrosis to keep her memory alive.