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Seth Galena and Hindy Poupko's 14 month old daughter, Ayelet was diagnosed with DC just two days ago--Feb. 3, 2011. Seth is anxious to contact other families dealing with this disease. You can write to him at sgalena@vml.com.
Sept 16, 2011 update: Ayelet is currently at Cincinatti Children's Hospital. She had a bone marrow transplant on 8/30/2011. You can follow her progress at http://ayeletgalena.tumblr.com/. Or click here to go directly to their blog.