The Story of Jayna & Brian
Our daughter, Jayna Suzanne, was born with a very rare medical condition called Agenesis of the Corpus Callosum. Agenesis of Corpus Callosum (AgCC) is a rare disorder that is present at birth (congenital). It is characterized by a partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres (taken from RareDiseases.org). In Jayna’s case, she has a “complete agenesis” which means that the Corpus Callosum (AgCC) is completely absent or not there. This condition is said to happen in 1:4000 of the population (taken from Caltech University, April 2007). Persons with agenesis of the corpus callosum may have neurological problems, such as seizures (60%), intellectual impairment (70%), and psychosis (taken from National Center for Biotechnology Information, 2010). Our Jayna does suffer from seizures and intellectual impairment although her seizures are in remission as of date and we’re praying she doesn’t have any more, however, that could change at any point. AgCC is not an illness or disease. It is a deformity where the brain did not form while in the 12th – 22nd week of gestation.