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.

Wednesday, August 12, 2015


The 23rd NNPDF Family and Medical Conference was held in Chicago this year.  That meant it was drivable...12 hours each way.  Yes, 12 hours in a car with a 2 year old.  Truthfully, I would do it all over again! We split the trip into 2 segments of about 6 hours each.

We had leisurely and scenic drives.  We had new experiences. We spent lots of time together.  We enjoyed our trip.

Yes, it was emotional.  There were new friends to be made and old friends to hold close.  Here is the short version of our week: https://goo.gl/photos/VJzP4rpPe8nRiBRG7


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