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Dealing with the Unexpected

My family and I, meaning me, my wife Fabiola and my step-daughter Khloe, went to the 12th Biennial International 22q11.2 Conference in Split, Croatia. 22q11.2 deletion syndrome is the most common cause of DiGeorge syndrome, a chromosomal disorder that results in poor development of several body systems and can cause heart defects, a depressed immune system and a cleft palate. The conference brings together experts from around the world to share recent developments, and also a few other patients, as they call us, to share our stories about living with 22q11.2 deletion. I spoke at a similar conference two years ago at Stanford University, so I was very excited for this opportunity.

After a grueling 10 hours of traveling, we finally arrived at the hotel where we were staying, the Le Meridien Lav Hotel in Split. We actually got there five days before the conference started to have a short vacation. The five days were great. My family and I were going to the beach, and the hotel had two pools, an indoor pool and an outdoor one. The day before I was scheduled to speak at the conference, we decided to have dinner in our hotel room, because we had been going out and about the old town the previous nights.

So we are ordering dinner, and I decide to get the chicken with polenta fries and vegetables, which I thought sounded really good. When our dinner came, we let Khloe eat in the room watching TV, while Fabiola and I sat on our little balcony eating and drinking wine. Dinner goes very smoothly, and then we decide to get ready for bed, which we did. Khloe got in her rollaway bed, and Fab and I got in our bed to wide down watching TV. We decided to have a little candy for dessert that we bought in the old city. After some TV and candy, we all went to bed because we were getting tired. Well, I am going to skip the TMI part, but I got food poisoning and was up all night for eight long, painful hours. I eventually had to go to the hospital, where I was given liquids through an IV. After a few hours, I felt much better, but was still a little too tired to go up and speak.

Later that morning I went downstairs with Fab for a few hours and listened to the members of the panel speak. Dr. Donna McDonald-McGinn asked if I wanted to speak, but I said no because I was still not feeling 100%. Now, I kind of wished I had, because I did want to tell everybody about my website,, which we recently revised and updated, and the two books that I have written, one with my late father, and the two documentaries that I did with HBO. The first book is my memoir A Different Life: Growing Up Learning Disabled and Other Adventures, and the book I co-wrote with my dad is A Life’s Work: Fathers and Sons. The first HBO documentary that I worked on was I Can’t Do this, But I Can Do That, and the second was about my dad, The Newspaperman: The Life and Times of Ben Bradlee. I was a co-producer on both films, and the first documentary was based on my memoir. I hope you will look them up online. Anyway, other than the food poisoning I had a great time. And I hope I don’t get sick at the next conference so I can speak.

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