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.

Saturday, October 5, 2013

The face of Niemann Pick Type A

I want to introduce you to little Amber.  Amber lives in New Zealand and has Niemann Pick Type A.

We had the pleasure of meeting Amber and her mom Laura and dad Dylan in Nashville at last year's Niemann Pick Conference.

Amber has had some serious set backs the past few days and the disease may be taking its toll. Her kidneys and liver are not doing their job anymore.

Amber can use some healing thoughts and mom and dad could use some prayers for guidance.  

I just added her blog to the Other Families tab.


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