The start.

Our daughter, Miss M, has Klippel-Feil Syndrome.  I know a day will come when she questions us, her parents, wanting to know more about her journey, why she was born this way, why we chose specific medical treatments, what our thought process was during her childhood.  If I’m anything like my own mother, I won’t remember unless I write it all down.  So, since I’m writing it down, I might as well make it public.  It was the most discouraging thing in the world for a “google” search to take me to the Rare Diseases office at the NIH.  Maybe if someone’s google search takes them here, and they can gain some hope and feel like they aren’t alone in their struggles, it will make my efforts to record Miss M’s history useful to others as well.

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