In May, 1988, my husband and I received news that our beautiful newborn daughter, Kathleen, had a rare condition called agenesis of the corpus callosum. We experienced such a flood of emotions it is hard, even now, to describe them. We knew nothing about what the future held for us, but only that this was a major, life-changing event.
Almost twenty years later, I am happy to say that we are all doing well. I am writing to welcome you to the ACC Network. Our lives have been enriched and made easier by this network in countless ways.
Information. When Kathleen was born, the only bits of information I could find about ACC were medical dictionary definitions of “agenesis” and “corpus callosum.” Our neurologist gave us a very short explanation in his own words, but was not able to direct us to any resources. Many years later, we have access to a growing body of information about medical, developmental, educational, and social aspects of our child’s condition. We don’t have all the answers, but we have a place to ask the questions, and little by little we are finding answers.
Support and Networking.. When Kathleen was born, we actually found support more quickly than we found information: family members, nurses, therapists, and other parents of children with special needs offered us kindness and support right from the start. None of them actually had experience with ACC, however, and we were often left feeling alone. Kathleen was … different, even from other children with special needs we would meet.
Through the ACC Network, we were able to communicate with others affected by ACC. It was an incredible feeling to finally meet other families who understood exactly what we were experiencing. The ACC Network has provided us with directories, group meetings, an internet support group, surveys, and the opportunity to connect with researchers. Being able to share our experiences has made it much easier to deal with difficult times and to look forward to the future. Our everyday experiences – good and bad – have helped other families who faced some of the same situations. Our search for answers to our daughter’s challenges has helped the body of information about ACC to grow.
Whatever your reason for visiting the ACC Network, I would like to welcome you to this wonderful organization. I hope that you will be as enriched by the experience as we have been.
Mother of Kathleen, 19 years, with complete ACC