Please consider a donation to the National Organization for Disorders of the Corpus Callosum in honor of our "Remarkable Reid." Thank you.
The Story of Our Remarkable Reid
Our beautiful son, Reid, was diagnosed with a rare disorder called complete agenesis of the corpus callosum during an ultrasound when I was around 7 months pregnant. The corpus callosum is the bridge between the left and right hemispheres of the brain that passes information back and forth. After being told the diagnosis, the doctor couldn’t tell us much so needless to say I was really scared. After barely being able to make the hour drive from New Orleans back home, I quickly got on the internet. The information I found was scary to say the least. After reading about this diagnosis, Paul and I knew that there was a possibility that Reid would not be able to walk, talk, or feed himself. I continued to gather all the information I could and pray. Through my internet searching, I found the National Organization for Disorders of the Corpus Callosum (NODCC). Two months after Reid was born, this organization had a conference in California. Paul went to the conference alone because Reid was so young. This great organization was able to provide support and information that cannot be found elsewhere. With this information, we felt more prepared for what Reid’s future may hold.
Reid is now 5 years old and in Kindergarten. He has had physical therapy and occupational therapy since he was born. He has met most of his milestones on time. He loves the Power Rangers, Legos, and playing with his brothers, Matthew (6) and Evan (2). For the most part, Reid seems very typical. He has a few problems that we are working through. He is sensitive and his feelings are hurt very easily. He over reacts to most things that do not go his way; however, he has always been the sweetest and most loving child we could imagine. Everyone who knows Reid knows what a miracle and blessing he truly is!
We attribute his success thus far to early diagnosis, early intervention, and the NODCC. We know, however, there will be challenges ahead. As children with a disorder of the corpus callosum get older, they begin to separate both socially and educationally from their peers. That’s not to say that Reid won’t be successful in life, but he is going to have to work much harder than the average person. There are some people with a disorder of the corpus callosum that have been able to graduate from high school, go to college, drive a car, have a job, get married, etc.
Every summer, we are able to go to a conference held by the NODCC. I’m not sure where we would be without this great organization. PLEASE consider a donation for the NODCC in honor of our “Remarkable Reid.” Your donation will help Reid and many others benefit from the research and support they provide.
What is the outcome with Agenesis of the Corpus Callosum? (See Dr. Elliott Sherr’s answer below)
Throughout childhood the nerve fibers of the corpus callosum continue to grow and become more efficient even through the teenage years. At this phase in their development, children with a normally formed corpus callosum make progress in their abstract reasoning and problem solving, and their social skills mature. A child with agenesis of the corpus callosum may have kept up with his or her peers until this age; however, they may begin to fall behind in schoolwork and social functioning. Therefore, the symptoms of agenesis of the corpus callosum can become more evident as they grow into adolescence and young adulthood.
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The NODCC is the only national organization serving people with a disorder of the corpus callosum (DCC) and their families.
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