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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.


  1. Natasha- I can't even begin to comprehend what you four are going through. But I think of Kenan and all of you often. I searched today and found this... I hope that you can find a way to write about it all someday if that is what you want to do.

  2. Hi Mike! Thanks for your comment. I've found that I just don't have the mental energy for the blog. We started a group page on FB called Kisses for Kenan. It's much more accessible for me. Please join us if you can.

    I barely check my gmail account, thus the delay in responding. Hope you are well!