About Rachel

Rachel is my 9 year old daughter that was diagnosed in July 2009 with Juvenile Batten Disease which is 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 sentance for all affected children. This disease comes directly from a DNA defect and is not contagious.

Rachel is going completely blind and will eventually lose her ability to talk, walk, remember, think and eventually, after becoming bedridden, my Rachel will die.

It is my 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 my daughter’s Juvenile Batten Disease.  It is my hope that by putting this information online that I will help another parent who is in my 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.