October is Niemann-Pick Disease Awareness Month.
Shortly after Dan was diagnosed, I heard about a TV show called The Doctors. I heard about the show because another NPC mom was going to be on the season opening show in September 2011.
I spent the morning running between Dan's room to check on him and the TV waiting for the segment to air. And of course, Dan wakes up and needs help just as the segment is starting. But I watched the segment, with tears streaming down my face. For the first time, I really understood what was happening to my baby. I read all I could and was just making contact with other families. But the show hit me hard.
The segment on how Niemann-Pick Disease affects the body is here.
Support from one family (Chris Hempel) to another (Kristen Lopez) is here.
Here is the synopsis original show in 2008 they did on Niemann-Pick Disease.
You might think of Alzheimer’s as a frightening disease most commonly experienced later in life. Imagine Chris and Hugh’s horror when their twin daughters, Cassi and Addi, started showing signs of the disease at age 2. Doctors were unable to find the cause of the toddlers’ ailments, and thought they were suffering from mononucleosis. Chris says, “As a mom, you have an instinct. I knew something more was going on than just mono.”
Now 4 years old, the twins were diagnosed with Niemann-Pick disease type C (NPC), and are experiencing a progressive degeneration of their nervous system which gives them all the symptoms of Alzheimer’s. Chris and Hugh wage a daily battle for their daughters’ minds and spend every waking moment searching for a cure. They share their devastating story and fervently pray for a miracle.