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Tuesday, February 21, 2012

Support Universal Newborn Screening, But Don't Wait For It.

Every time I sit down to write about Kenan I freeze, overwhelmed with where to begin, how to explain the complexity of his struggle, how to describe the fierce pace of his illness or the slow, drawn out pain of being his witness.  He is a baby, born from our hopes and dreams, inheriting a fatal disorder from us instead. No one speaks of the guilt.