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Our son Keegan has a rare disorder called Complete Agenesis of the Corpus Callosum. The Corpus Callosum helps the Left and right sides of the brain communicate.

When keegan was a baby he was not meeting any milestones and had abnormally strong gag reflexes when he would eat or drink. At age 1 the pediatrician had us do a MRI to make sure he did not have any fluid build up in his head. His brain was healthy, but they noticed he was missing his Corpus Callosum. Today Keegan struggles with Fine motor, Gross motor, eating/chewing, problem solving and speech. Even with Therapy he is on a 11-13 month old level rather than 2 years. There is a lot unknown about his condition and it is hard to predict what he may or may not do one day. If there is one thing I can say about Keegan it is that he is a very happy, determined kid who LOVES MUSIC!

Thanks to NODCC we are finding out more and more each day. They are a great support system who have given us so much information on Keegan's condition. It is nice to have other input from parents who's children share the same disabilities. If you would like to help us support them you can make a donation today. Every little bit helps!

Here is some more information about Keegan's Disorder...

The corpus callosum (call o sum) is the largest connective pathway in a human brain. It is made of more than 200 million nerve fibers that connect the left and right sides (hemispheres) of the brain.

If we cut a brain in half down the middle, we would also cut through the fibers of the corpus callosum. When looking at the middle side of one half of the brain, for example, in magnetic resonance imaging (MRI), the corpus callosum looks like a cross-section of a mushroom cap at the center of the brain.

Each hemisphere of the brain is specialized to control movement and feeling in the opposite half of the body, and each hemisphere specializes in processing certain types of information (such as language or spatial patterns). Thus, to coordinate movement or to think about complex information, the hemispheres must communicate with each other. The corpus callosum is the main connector that allows that communication.

Complete Agenesis of the Corpus Callosum
If the nerve fibers don’t cross between the hemispheres during that critical prenatal time, they never will. ACC becomes a permanent feature of the individual’s brain. The callosal fibers may have started to grow, but when unable to cross between the hemispheres, they grow toward the back of the same hemisphere where they began. These fibers form what are called Bundles of Probst. Some smaller connections between the hemispheres develop in most individuals with ACC. These are the anterior commissure, posterior commissure, and hippocampal commissure. However, each of these is at least 40,000 times smaller than the corpus callosum. Thus, they cannot compensate completely for the absence of the corpus callosum.

Updates and Donor Comments

  1. Holly HeflinHolly Heflin 11/14/2011 at 09:28 PM ET
    Keegan and his family are an inspiration! Much love to the Ross family!
  2. Christine A MahoneyChristine A Mahoney 10/18/2011 at 03:11 PM ET
    Wishing you and your family all the best in the world!
  3. Megan L BrewerMegan L Brewer 10/14/2011 at 03:53 PM ET
    Glad to support!
  4. Katie CullenKatie Cullen 09/19/2011 at 10:01 PM ET
    Keegan in such an incredible little guy with an incredible family to match! xoxo
  5. Amber RossAmber Ross 09/17/2011 at 12:06 PM ET
    We love you Keegan! Love, Amber, Joe and Tyler :)
  6. kathryn m sharpkathryn m sharp 09/13/2011 at 11:08 PM ET
    Looking forward to seeing all of you soon ;)
  7. caitlin baileycaitlin bailey 09/13/2011 at 10:46 PM ET
    Your love is all Keegan will need to have a fabulous life!!
  8. Lisa WallaceLisa Wallace 09/11/2011 at 06:28 PM ET
    We are always here to help and support!!! xoxoxo!!!
  9. judi b van parysjudi b van parys 09/08/2011 at 09:29 PM ET
    You have such a warm loving family Keegan that you are sure to have a full and wonderful life! Judi Van Parys and family
  10. Elizabeth VN KilloElizabeth VN Killo 09/08/2011 at 07:52 PM ET
    In honor of our amazingly special nephew Keegan. We love you! -Nikki, Joe, Cael and baby Kenley
  11. Jessica Grisafi KilloJessica Grisafi Killo 09/08/2011 at 09:45 AM ET
    We love our cuz, you are the cutest! Love, Ryan and Grayson
  12. Jacqueline BrewerJacqueline Brewer 09/07/2011 at 02:50 PM ET
    Nate loves his friend Keegan!!
  13. theresa drydentheresa dryden 09/06/2011 at 12:51 PM ET
    God's Blessing

Organization Information

  • Summary

    The NODCC is the only national organization serving people with a disorder of the corpus callosum (DCC) and their families.
  • Reports

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