I can completely understand why the professionals see “scattered skills” in Hannah.  In some respects, she definitely acts a few months younger in terms of what she understands and what she does.  With the exception of saying “you want uppies?”, she never really seems to understand what we are asking of her and just smiles.  But after hundreds of “you want uppies?”, she finally does get excited and tries to lift her arms up so we can grab her.

Then she does some things that just seem so smart, so on track…like this.  When she started following us, I was just amazed…this requires physical skill and definitely thinking about how to turn around and maneuver smaller areas. 

To me, this is just amazing!  My little girl just amazes me sometimes.

I have known about Jessica and her family since Hannah was first suspected of having Niemann Pick type C back in November of last year.  NPC is incredibly similar to neuronopathic Gaucher’s disease with the exception that instead of the lack of a certain enzyme to rid Hannah’s body of fats, NPC is lacking the enzyme to rid the body of cholesterol.   These lysosomal storage diseases are brutal. 

Jessica’s story was featured on CNN yesterday with regards to the California budget problem.  

I look at the video of Jessica just a few years earlier, dancing, smiling, and just being a little girl just like Hannah is a smiling and happy girl now. Then the progression of these diseases since we have no cure or treatment for either of them.

Just a reality check as to what we will likely have to deal with in the future…