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.

Sunday, November 25, 2012

Christmas Gifts

A few weeks ago, a mother with a young teen affected by Niemann Pick Disease sent a question to other families:

What do you get your child for Christmas when they have trouble playing with toys and have no real interests other than watching tv?

For those who don't understand the question....

Niemann Pick Disease slowly robs those affected with all their abilities.  In most cases, a child progressed through the developmental milestones fairly normally for several (or many) years.  And then the slow deterioration started.  The child starts to lose the ability to walk, talk, eat, etc.  It doesn't happen overnight, but is a gradual process.  Eventually, most children are wheelchair or bed bound, unable to feed themselves, may be blind, and may not know their family.

Some suggestions included:
bean bag chair
character clothes shoes
ceiling decorations
hanging mobiles
remote control toys (with big controls)

What would you chose to get this child for Christmas?


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