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, April 17, 2013

Undiagnosed Day

I knew this was coming, and still missed it, but I wanted to talk about it anyway....

And here is a video too

We spent just about 4 1/2 years undiagnosed with Dan.  There were times we wanted to give up and times we did.  When we started our journey in 2006/2007 genetic mutation testing was not often performed and required lots and lots of paperwork.  The tests have gotten better over the years, and more conditions are being "discovered".  But we still do not know much about these "new" conditions - causes, treatments, cures.  There is still alot of work to be done.

Although it is a few days late, please take a moment to think about those with kids who are struggling to find answers.  Before you judge their actions or question their motives or intentions, take a minute and truly think about what you would do if you were in that situation.


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