Jessica Leoni and her family, a CNN story

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…