September 8

True Hero: Kevin Dwyer

When I moved to New York 26 years ago, I didn’t really know many people, but my brother was here and I ended up spending most of my time with him and his group of friends. Many of them were in the ballet world, and while I was between cooking jobs, I was fortunate enough to spend some time working with the incredible choreographer, Jerome Robbins. Jerry needed some help here and there and I wound up finding myself at the ballet more often than not. It was around this time that I met a dancer named Kevin Dwyer. He was at The School of American Ballet at the time, and we just hit it off. After school, Kevin left the city to dance with another company, but when he came back, we ended up becoming roommates.

Needless to say we spent a lot of time together, and it wasn’t until we moved in together that I found out Kevin had cystic fibrosis. For those of you who don’t know what CF is, it’s a genetic disorder that affects the lungs, making it almost impossible to breath at times. CF is chronic, almost always life threatening and although technically a rare disease, cystic fibrosis is ranked as one of the most widespread life-shortening genetic diseases in the Western world.

Even though he was suffering, Kevin didn’t talk about it, he never seemed symptomatic and it wasn’t until we slept under the same roof that I found out just what it took for him to get up every morning. It was brutal: there were meds that he had to inhale and coughing fits the likes of which I had never heard before. It was scary and terrible but it also created a bond between the two of us. Kevin had never let anyone see this side of him, and I think it was a relief to him to have a friend who knew what was going on. He’s a strong guy, and so proud, and he didn’t want people to feel sorry for him, but he was also grateful to lessen some of the burden. He told me that his life expectancy was 40, that he would be lucky if he made it that far.

Kevin has suffered greatly over the years, but as I said, he is strong. Much stronger than anyone I know. Two years ago he and his girlfriend ran the New York City Marathon for Team Boomer as part of the Boomer Esiason Foundation that encourages people with cystic fibrosis to incorporate exercise into their everyday lives. It provides an avenue for individual athletes in a variety of sports to raise money for cystic fibrosis; and offers assistance to grassroots athletic events looking for a cause to support. It was an incredible day, made even more poignant by the marriage proposal he delivered to Katie at the finish line. It was a moment of real hope, that at 39 years old, he was going to make it long enough to marry the woman of his dreams and live a life he imagined.

But this past year was a rough one. Kevin was in and out of the hospital, fighting for his life in more ways than one. More than the hospital stays, the inability to breath and the sleepless nights and weight loss, was a fight he battled off the field – with his insurance company. It turns out that there is a drug that could literally save his life. The drug, called Kalydeco, is actually slowing the disease in some patients and, ideally, extending their lives. In fact Kevin’s sister who suffers from the EXACT same disease was given Kalydeco by her doctor, but when Kevin went to get a prescription for it, his insurance company denied the request. Kevin fought the claim, bringing the issue to the attention of The Today Show’s Jeff Rosen and pressuring the insurance company to allow him to take the drug and ultimately he won!

And here we are, 25 years later, and Kevin is very much alive. Kalydeco has literally saved his life. He has gained weight, has seen an incredible increase in his lung capacity, and as he told me, he feels he has a new lease on life. It’s amazing, and I can’t tell you how grateful I am that his quality of life has improved so much.

Because of Kevin, I will be participating in the Cystic Fibrosis Grand Chefs Gala at Carlyle on the Green in Farmingdale, New York on October 24th. This year’s event will honor Kevin and his wife Katie, and there’s nowhere I would rather be.

For tickets and more information please click here.

And you can see the piece The Today Show did on him here.