How Cystic Fibrosis Shaped My Life


I don’t have Cystic Fibrosis (CF)—an inherited chronic disease that affects the lungs and digestive systems of roughly 30,000 children and adults in the United States alone (70,000 worldwide)—rather my childhood friend, Tom Grotta, who is like an older brother does. Tom and I have known one another since 1971, when I was two and he three. We grew up in the same town and our parents were close friends so while most of the kids around had no idea of the goings on of the Grottas, I had a front row seat and this is what I remember—that my friend had a life expectancy of nine years old in the 1970’s. And each day I tried to fathom how Tom could wake up every morning knowing that his death was imminent.

People with CF have a defective gene and partner protein that cause the body to produce an incredibly thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; it also obstructs the pancreas stopping natural enzymes from helping the body break down and absorb food. Not pretty!

I recollect playing in his room seeing his bed covered in a plastic bubble—a mist tent to keep the mucus hydrated thus loose; and the multitude of breathing exercises he religiously did to prevent the mucus from building up. The large handful of pills he took each day, from enzymes to antibiotics, were mind-blowing (roughly fifteen pills per meal) and whenever my mom spoke to his mom, I would get nervous that something was wrong with him. Despite all this, you would never know that anything was awry in any way whatsoever as Tom never stood out because of CF.

But he did stand out as one of the coolest kids in school, one of the best athletes and of course as an older brother figure to me. He gave me many gifts including perspective—I understood what real problems were from a very young age. Thus, when I tell you that part of my life’s mission was to figure out a way to help him, it’s no joke.

It started with me pushing dietary change his way beginning in our teens. He would hear nothing of it. Then I opted into college as a bio major so I could become a scientist and work to help find a cure for this awful disease. Unfortunately majoring in bio and me did not mix too well. So I continued to stand by as his friend, visiting him in the hospital when he landed himself there, connecting with him regularly and still trying to push healthier edibles his way.

About eight years ago, Tom called and said this, “How about starting an event in the Hamptons to benefit CF?” Without hesitation I proudly took on the task. Sometimes the best way to help people is in the way that they want and need your help (meaning that me, Tom and food guidance were a recipe for disaster). In 2007, Breath of the Hamptons was born and to date we have raised close to three million dollars to fund research for a cure—something that I am honored to be a part of.

Tom is now 45 (pretty remarkable for someone with Cystic Fibrosis), married to one of the strongest and most courageous women I know and has two kids. And while I may not be a scientist working towards a cure, or the one giving my friend foody advice, I am doing what I can (and what he wants me to do) to help him and all of the other people living with CF.

PS. Tom is being honored this year at the Breath of Life Gala for all that he has done to make a difference in thousands of people’s lives, including his own!

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Blog 2

(at Breath of the Hamptons July, 2013)