Rachel is my super awesome 15 year old daughter that was diagnosed in July 2009 with Juvenile Batten Disease: a crappy, 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 of funding (they like to research diseases that will make them money) and the sheer complexity of treating a disease within the brain, Batten Disease is a 100% fatal, genetic brain disease.
Rachel is blind and is losing her ability to talk, walk, remember, think and eventually, my Rachel will die. She is also affected by dementia, a condition usually associated within the elderly population.
The goal of Team Rachel is to raise awareness of Batten Disease and 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.