Thursday, April 30, 2009

Agenesis of the Corpus Callosum

When my son was diagnosed with Agenesis of the Corpus Callosum (ACC) he was a baby still in my arms...only four months old. He was diagnosed with ACC by a CT scan. Matthew is 15 years old now but I remember the day he was diagnosed with ACC very clearly. I wanted to know what it meant for my baby, how it would affect him, I wanted to get answers to all my questions and that just wasn't possible.

Agenesis of the Corpus Callosum has such a broad range of outcomes and each person with ACC can be affected differently. ACC can also be seen with a variety of other medical conditions such as genetic syndromes and chromosome anomalies.

When Matthew was four years old I created a website in the hopes that it may help other people more easily find information regarding ACC because when my own child was diagnosed there was relatively little, if any, tangible information to be had.

I was very lucky to have a wonderful pediatrician for Matthew. She copied the information she had about ACC from her medical book and handed it to us and then she made sure that Matthew saw all the necessary specialists that were needed. I am so thankful to Matthew's doctor for handling the entire situation and diagnosis in such a positive and professional manner.

Often times parents are given the diagnosis of ACC and then told horrible outcomes for their baby/child, given little or no hope, sent home to worry, wonder, wait and fear the worst. That just should not happen and I hope that more and more medical professionals will become better educated about Agenesis of the Corpus Callosum and other corpus callosum disorders and think before they attempt to speak the future of that little baby or child.

More information about ACC can be found at:


  1. Hi Sandie.

    I enjoyed reading this. My regular ed students enjoyed the talking books too, especially one by Jack Prelutsky where he sings some of his silly poems.

    You have gone to a lot of work to make this nice and informational. I hope it helps others understand ACC better.

    Best of luck to you and Matthew.

    Susan, Beth's mom

  2. Susan,

    Thank you so much for taking the time to read the posts and for your helpful input and nice comments.

    As a teacher and the parent of a child with ACC, your input is highly valued. I look forward to checking out the talking book of silly poems sung by Jack Prelutsky. :)



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