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, October 29, 2014

Life of Dan - Life After Diagnosis

For Niemann Pick Disease awareness month, I wanted to post a few videos.  Many people who read this blog never met Dan when he was "healthy" and many never met him at all.

This video was taken in July 2011, about one month after we received his NPC diagnosis.  You can see that he still knows my voice, but has trouble picking his head up, using his arms and hands, is drooling a lot, and has lost most of his sounds.

We tried to keep him engaged in activities and things he enjoyed as much as we could.  His mental capacity has probably diminished and his motor skills were significantly declined.  We didn't have any special equipment or support - no specialized stroller, wheelchair, high chair, or bed.  We didn't have any financial or family support.  It was just the 3 of us.

In just a few short months we went from a child who could at least crawl, to one who couldn't pick his head up.  We also spent 3 weeks in the hospital and weren't allowed to get him out of bed, so I think the muscles weakened which hastened the disease progression.

You can see the other videos of Dan here and here.


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