Looking for other children with disorders of the corpus callosum

Annie - posted on 02/11/2014 ( 2 moms have responded )

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Hello! My son was born on June 17, 2011. He has complete agenesis of the corpus callosum. I'm surprised at the lack of information is received about this condition, and the apparent lack of interest it seems his doctors show towards it. He was premature, and I feel like all of the problems that have raised since his birth and beyond, they have attributed to prematurity. From my personal research, however, I have found that almost all of his so called "problems", and common symptoms to ACC. I would love to chat with parents who have children with similar problems, and can give a little more detail about my sweet boy. I feel like I have no resources, I don't know where I can turn for information on this! Thank you!

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Annie - posted on 02/12/2014

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Thanks for the response! But I can't seem to find the Facebook groups, the links won't work! I have navigated around the NODCC website a few times, but I'm in Canada and definitely couldn't afford to attend the conference. There are no Canadian groups that I can find!

Kristina - posted on 02/11/2014

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Hi, my daughter has complete agenesis of the corpus callosum, she is 14. Are you familiar with the National Organization of Disorders of the Corpus Callosum (www.nodcc.org)? They are having a conference in Burlington, Massachusetts July 18-20th. There are also several great Facebook groups with wonderful parents that have children with ACC. Here are their links;

https://www.facebook.com/groups/133777474266/
https://www.facebook.com/groups/69956886962/
https://www.facebook.com/groups/182201855144831/
https://www.facebook.com/groups/hypoplasiaofcorpuscallosum/
https://www.facebook.com/groups/136068819771

Don't get discouraged, YOU ARE NOT ALONE.
Kristina

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