Late Infantile Batten Disease is a fatal, inherited disorder of the nervous system that begins in early childhood. Symptoms of the disease begin appearing in children as young as 2, but may have a delayed onset, and may strike a previously normal child as old as 10.The disease is progressive causing developmental delay, cognitive and motor impairment, seizures, and a progressive loss of sight. Most, if not all affected children, become blind by the age of 8, become bedridden, and become totally dependent on a loved one for continuous care. The disease is realtively rare, occurring in "2 to 4 of every 100,000" children.

Chad was a 13 year old boy living in Winnipeg, Manitoba, Canada. He started out his life healthy and grew as a healthy child would, walking, talking and playing. At age 2 he began seizuring and progressively began loosing his coordination and sight. As conventional anti-convulsants became ineffective, it became more and more apparent that Chad was suffering from something more than just a seizure disorder. At the age of 4 Chad was finally diagnosed with Late Infantile Batten Disease and his parents were faced the grim reality that Chad would progressively deteriorate, eventually loosing his speech, go blind, become bedridden, and die. As the disease ran it's course, Chad's finally passed on Easter Sunday, April 11th, 2004.

In 2004 the reality of a treatment brought together Chad's Hope, an organization of friends and family of Chad working together with a common goal of raising funds to encourage ongoing research with the hopes of a potential treatment and cure for the afflicted children. Chad's Hope continues, raising funds for ongoing research initiatives and making it financially possible for afflicted children and thier families to seek treatment.

This discussion group was created to facilitate contact between families, to stimulate discussion, and to create an ongoing awareness about Batten Disease.