Batten Disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs). Over time, affected children suffer mental impairment, worsening seizures, dementia, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and presently is always fatal. The diseases cause death of neurons (specific cells found in the brain, retina and central nervous system). The reason for neuron death is still not known.

The hope of the future lies in research. As everyone knows, scientific research of any kind is driven by funding.

Please support the research effort for a cure, for my daughter and hundreds of other children. Thank you!