Rachel is my 12 year old daughter that was diagnosed in July 2009 with Juvenile Batten Disease: a fatal, neuro-degenerative disorder. This disease (in a nutshell) causes cell waste material to build up and kill healthy cells in the eyes, brain and central nervous system. Unfortunately, because there is so little funding and awareness, Batten Disease is a death sentence for all affected children. This disease comes directly from a DNA defect and is not contagious.
Rachel is blind and will lose her ability to talk, walk, remember, think and eventually, after becoming bedridden, our Rachel will die. She is also affected by dementia, a condition usually afflicting the elderly.
It is our goal to help raise awareness and money for Batten Disease research so we can start treating this disease and eventually rescue these children (who were born NORMAL) from their fate.
The following links will take you to PDF documents which illustrate Rachel’s Juvenile Batten Disease in the early stages. It is our hope that by putting this information online that we will help another parent who is in our shoes or who is considering this diagnosis. This is for informational purposes only, please consult a board certified Pediatric Neurologist for medical advice or diagnosis.