ACC - YES! YES! There is a Genetic Link!

Agenesis of Corpus Callosum
#1

Greetings -
I have a 5 year daugher with C-ACC, a 2 year old son who is completely typical and a 5 month old son with C-ACC. THERE IS A GENETIC LINK!!! I wish we would have known. My husband and I were told there is no genetic imprint, this is not a chromosome issue, it was just one of those things.

We are involved in a study with an MD on the west coast who is studying families with more than one ACC child.

Thankfully our daughter is very high functioning. However we are starting to see some off topic conversation and issues in school.

Hope it helps - Patty in OHio

#2

Hello Patty,
I saw from your post that you are from Ohio. I too am from Ohio and would love to get in contact with you. I have a 14mo old who was just diagnosed with ACC.

#3

Thank you for posting this. I had posted a question about siblings with ACC. I have one child with ACC and microcephaly. My husband and I would love to have another child in the future but are very concerned and very cautious. I had really not heard of many families with more than one child with ACC until I met a woman on this site who was helpful. We too have had the genetic testing done that is available so far. We are in the process of enrolling in a study in Boston. We just last week came across another problem. My son’s eyes. We will be having more testing done about that and it seems may lessen our chances even more about having another child. It is all very frustrating. You are brave and I commend you for raising two children with disabilities. My son is globally delayed. He is a joy though and I wouldn’t trade him for anything but I don’t think I can go through this heartbreak again.

#4

Also, they told us that it appeared to be a sporadic thing. There are no chromosome issues with us but they did tell us that there is always a 25% chance of it recurring. I wish I understood genes more but they said that my husband and I could both be carrying a recessive gene that would cause it but there is no way of telling.