I was touched by the heart-breaking story of the five year-old twins, Addison and Cassie Hempel who are suffering from Niemann Pick Type-C  (NPC), a disease that causes dementia in children.  This means they slowly forget what they know and eventually die young if left untreated.  There are 500 children worldwide affected by the disease.

      NPC is a genetic condition wherein children cannot process cholesterol which slowly builds up in the body causing cells to die and leading to organ failure. The neurons in the child’s brain cannot process cholesterol so brain cells break down thus causing dementia. The good news though is that there is hope.

    The twins are now granted “compassionate use” (as per parents’ request) of the sugar compound, cyclodextrin which will extract the cholesterol in the body and may help with their condition. The sugar compound will be infused directly into the twin’s bloodstreams by a tube placed in their chests. There’s hope also that those who suffer from Alzheimer’s disease may benefit from the same treatment.

    It is really impossible for most parents to give up on their children. In this case, the twin’s father has been working closely with doctors for the development of this treatment.  The twins’ parents are not only giving hope to their children but to the many families with children affected by the disease.