Absent/Agenesis of the Corpus Callosum (ACC/AgCC), Disability


2 July is International DCC (Disorders of the Corpus Callosum) Day. I found this reminder on my Facebook wall today and decided to use the opportunity to spread awareness about the fact that our family is also affected by this disorder. The result was that I had quite a long discussion with my cousin who recognizes similar behaviours in her son as well as her Dad, but has never heard of DCC. I decided to start a blog about our journey (with AJ’s permission):

When I was 16 weeks pregnant the ultrasound picture showed a very large dark area in the head which meant that our baby might be born with hydrocephalus. We were devastated and prayed and cried a lot. When AJ was born we were told that he had an Apgar score of 9 and was therefore a normal baby after all. We were thanking God for a pure miracle!

After a few months though, his head was growing way too fast. The paediatrician ordered a MRI. It turned out that AJ had no corpus callosum. The technical term is AgCC (absence of the corpus callosum). In 1990 the internet was in it’s infancy and there was neither information nor support groups available and we did not know too much about what to expect…

Family Time

PS. AJ is by now 30 years old and I will add a little bit every year to share a little bit of our journey…

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