Batten Disease is a rare degenerative brain disease that affects children. Children are born normal, and reach most developmental goals. BUT… when the disorder manifests itself, the children soon become blind, suffer many different types of seizures which often become extremely hard to control. They will begin to suffer cognitive decline, begining with the loss of short term memory. Many will suffer drastic personality changes, sometimes bordering on psychotic behavior. Mobility is affected begining with stumbling and ending with the child being in a wheelchair.

One of the most difficult stages of the disease occurs when the child loses his/her speech. When that’s gone, it becomes a guessing game as to the child’s needs, pain, etc. This is followed by the loss of the abilities to eat and drink. Children will soon be fed through a tube inserted through the abdominal wall.

The disease causes death of brain cells. Death for the child happens when the brain can no longer sustain life.

Batten Disease was first identified 180 years ago. However, it has only been in the past ten years that progress has been made. Today there is a treatment trial underway, and we are hoping for two more trials to start next year.