Ian Vasey fundraising for NATIONAL ORGANIZATION FOR DISORDERS OF THE CORPUS CALLOSUM
National Organization for Disorders of the Corpus Callosum provides education, research and support for those affected with this disorder.
Ella is a beautiful and fun loving little girl who happens to have complete Agenesis of the the Corpus Callosum or C-ACC for short. The disorder may sound like a mouth full but what it means is that Ella was born without a Corpus Callosum. The Corpus Callosum is largest connective pathway in the human brain. It is made of more than 200 million nerve fibers that connect the right and left hemispheres of the brain. There is a very long and scientific way to explain what happens without a corpus callosum but I prefer to give a simple example. In a normal brain information is passed back and forth through the corpus callosum like a super highway with 6 lanes and no speed limit. Ella has no such highway, she has a dirt path through the mountains in the dead of winter so information takes much longer to travel from one side to the other. Ella was diagnosed a little after her 1st birthday after getting an MRI because she was not progressing developementally. The diagnosis was a shock and it took us a while to figure out what it meant to have ACC. It turns out that each person with ACC has different challenges and different strengths. Ella is making progress but a little slower than other children. She didn't walk until age 3.5, still doesn't talk at age 4.5 but manages to get her point across most of the time. She has seizures that require her to take medicine and routine bloodwork to check her levels. Although it can be tough at times, she is very happy most of the time and is now running around getting into things. She has the best laugh you could ever imagine and I challenge anyone not to smile when you hear it. She loves music and is the best dancer around. The NODCC helps Ella and children like her by providing support, education and research into this disorder. Please give to the NODCC to help Ella and other's like her be the best they can be.