Danny J. Daly

Danny was diagnosed with complete agenesis of the corpus callosum in 1985 at the age of 3 months. Beyond the definition of the disorder, doctors had very little information for us. They gave dire warnings of great disability, but no information on how to cope with this. My late wife Peggy, a science teacher, searched the medical literature, found the names of some researchers, and we visited them. But their advice was very limited. Then somewhere she found the phone number for the ACC Network, called up, and had an hours long conversation with Kathy. Suddenly we were no longer alone.

The directory from the ACC Network showed us what other parents were encountering. Their stories told us how they were dealing with it. The first gathering in Connecticut in 1999 brought us face-to-face with other families. Danny got to meet other youngsters with similar disabilities. This information put us on the path of finding appropriate medical treatments. It guided us to seek the educational programs that would enable Danny to develop his skills and compensate for his disabilities.

NODCC has inherited the mission of the ACC Network. With resources like national family conferences, newsletters, a large and comprehensive webpage, and still, people who answer the phone and talk to parents or individuals who have just been diagnosed – people can get the information it took so long to find when we were starting out.

Your donation to the NODCC will make it possible for us to continue and improve this service to people with disorders of the corpus callosum.