A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, October 11, 2012

Dan's Legacy

October is Niemann Pick Disease Awareness Month.


If you read the story of our journey to get Dan diagnosed (also the top link on the left side), you see the difficulty in getting a diagnosis.  We are not alone in that difficult journey.

Near the end of the article I write about meeting with Dan's neurologist in Boston.  We did meet with him.  We gave him the 6+ inches of paper medical records we had and a CD with imaged copies of those records.  We also gave him 2 DVDs of the videos of Dan's life, from near birth to near death, all chronologically dated.  The last item we gave him was a few pictures of Dan for him to put in his office as a reminder of rare diseases.

We did the same thing with the local neurologist, although he didn't get the paper records.

I will be sharing the same records with the Center of Rare and Neglected Diseases at the University of Notre Dame.

Since I have provided the doctors with Dan's records, I have heard from them several times, requesting permission to share some of the information with colleagues or in seminars.  I have willingly and eagerly provided my consent.  Although Dan's name is not used in these seminars, his medical progression and chart information is.  And he is teaching others about THIS rare disease.

There is a belief that every person is put on this earth for a particular reason.  Maybe Dan's reason was to share his story and help spread awareness.


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