Most of you have heard about our daughter Charlotte's diagnosis of Batten's disease. It is a terminal illness, and she happens to have the rarest type characterized by a very short life span of 5 or fewer years. This form shows symptoms as early as 10 months old. The...

For several months now we have noticed that Charlotte is not thriving as a normal toddler would. Some motor skills seemed delayed, new skills she would learn she quickly soon forgot. Over time she stopped walking, talking, playing, and interacting with those around...