Hi...

I am Matthew's Mom. Matthew was born with agenesis of the corpus callosum. The corpus callosum is the middle section of the brain that connects the two hemispheres of the brain and allows for communication between the right and left sides of the brain.
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Thank you.

Sandie--Matthew's Mom

My daughter, Katie, also has agenesis of the corpus callosum. How old is Matthew? Does he have any other diagnosis? The ACC is the only diagnosis Katie has, and we haven't been able to get any answers about her future. She is 2 1/2 years old, and is severely delayed, she is about 8 months old developmentally. She just barely started to crawl. She doesn't say any words, doesn't feed herself, can't stand up by herself, can't pull herself up, and doesn't make good eye contact. She was just tested by her therapists, and is less than 1st percentile in all areas of development. No one really understand why she is so delayed, she's very healthy and COULD walk and pull herself up, etc., but she doesn't. I haven't been able to find anyone else with the same situation as hers. The good thing is she continues to make progress, just very, very slowly. I would love it if I could find someone else with an ACC baby.

Kim

Hi Kim,

My son, Matthew, is 15 years old. He has complete agenesis of the corpus callosum.
One of the most difficult things to deal with after the diagnosis of ACC is the "wait and see" period without any answers. It was the hardest part for me.

Like your little girl, Katie, my son was also quite developmentally delayed and did not meet any of his milestones on the typical timeline.

It is not yet understood why one child with isolated ACC
(meaning having only ACC and no other diagnoses) is high functioning and another child with isolated ACC is challenged. The same thing goes for if a child has partial agenesis of the corpus callosum...meaning part of the corpus callosum is there.

There is research being done but the brain still remains a mystery in so many areas.

Matthew also has low muscle tone and he was very low tone when he was a baby and a young toddler/child. Having low tone is something that makes it difficult for a baby/child with ACC to use their muscles and learn to sit unsupported, learn to crawl, etc.

It is not uncommon to not be able to find another child
who is affected as a result of ACC exactly like your own child. Each person with ACC can be affected differently.

There is a wonderful e-mail support group through the ACC Network called the ACC-Listserv. I think you would be able to find several other parents with little ones your own child's age who could relate to you and find support and perhaps even someone local in your own area who has a child with ACC.

Also, there are A LOT of family web pages on the Angels Around the World-ACC website with pictures and information about the babies and kids who have ACC. You can find that site below:

I am so happy to hear that Katie continues to learn even though it is very slowly. My son, Matthew, was the same way. His progress was VERY slow with months and months of therapy to learn one thing. Some things took a year of therapy to learn...such as crawling. Matthew didn't learn to crawl until he was about 2 1/2. Each child is different and unique in how they will learn and when they will learn something.

I was told by Matthew's Pediatric Neurologist that they don't understand exactly how but that through therapies kids can sometimes make other connections and pathways in the brain even without the corpus callosum connection missing. I know it to be true because my son, Matthew, has been receiving physical therapy, occupational therapy and speech therapy since he was an infant and he has continued to make progress.

This forum does not allow someone to leave links here without posting ten times so I am unable to leave you the links to my Agenesis of the Corpus Callosum websites. You can find them in my profile though. I would very much like to e-mail with you further.

I am going to leave my e-mail here for you. Please e-mail me anytime if you would like to talk further. If you need help joining the ACC-Listserv support group please let me know and I am happy to help you.

(it won't let me leave my e-mail either) please refer to my profile.

Sandie

hello Sandie, I have ACC as well and wonder if mathew suffers from lack of depth perception? As in seeing objects flat or unable to judge distances? I was diagnosed at age 12 ( i am 37 now) but only recently learned the name of my "missing membrane" as the U of M called it. My neurologist confirmed the ACC with another MRI scan last april. I also have Septo optic dysplasia and vision in my left eye only. I suffer poor health and a whole host of nuerologic conditions and am trying to find out which are due to my ACC.. things like gatroparesis, weak muscles, neurogenic bladder and bowel ( I have an implanted neuro stimulator to make these work) I am also in alot of ACC groups so if I post any repeats here.. I appologize. Sincerely, Jo C ACC, Septo optic dysplasia and chiari malformation.