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43 Entries
Rosemary Grossman Email

Location: Staten Island N.Y

How did you find this website? Google

Hello, my name is Rosemary. My husband and I just recently found out that's our 10 year old has Agenesis of the corpus callosum. she has always had a learning disability, we thought it was a normal learning issue. Well she got really sick one day with meningitis and low and behold, they found in the cat scan, then in the MRI, that she was missing,her entire corpus collasum. It was heart breaking to us. Then they decided to run genetic testing on her and they found that she a rare Disorder that they couldnt even explain. Her chromosome 8 duplicated itself. Ive called the genetic specialist but,have not been able to make an appt. I really want to learn more about my babies disability. She has so many problems learning. She was held back in kindergarten, and 3rd grade, now they want to hold her back in 4th grade. She loves acting, she was able to land an extras job on the movie "Winters tale" with Collin Farell, but nothing more after that. Acting,is her passion. I want to try and get her more roles or print jobs so i can help her with her self esteem. Sometimes i get scared of her hurting herself because of her struggle to learn. I just recieved


Location: Howell, Michigan

How did you find this website? google

Homepage: MSN

Wrote earlier about our wonderful 11 year old son!  I am amazed and shocked as I'm just getting on this site at the continued lack of support we have not received from any doctor(s).  Not a single pediatrician, neurologist, or neurosurgeon, teacher, or counselor have ever directed us to a support group, or even given us any information other than the dx.  I was a NICU nurse for many years- felt like we were just left hanging.  Our son is AMAZING!  Our greatest gift!  We want to be able to help him to be able to do the best he can, and enjoy life.  We want to prepare him and help him along this journey!  How do I gain a password to your guestbook?

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Toni Email

Location: Georgia

How did you find this website? Google

My son was born with partial corpus callosum. He is 5 years old now and in Pre-k. He is having a very hard time learning his colors. Have any other parents noticed this with their children?

Christa Andino Email

Location: Miami, Fl

How did you find this website? another acc website

My son, Nami, is 6 weeks old and has isolated c-acc. He was diagnosed in utero. We stayed in the NICU for 1 week mostly for testing. He had an MRI, pituitary gland hormone tests, ophthamology visit and tests, and physical therapy. So far he only has weak muscle tone in upper extremities but mild.

Thank you for creating this site. It has alot of information.

I am looking to find other moms locally but have not had any luck.

Thanks again!

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Brian Malaquias 

Location: Beverly

How did you find this website? Web Search

I love this site.  It has a lot of good sayings and good information.  Please check my blog out that I just started.


Location: Stoke

How did you find this website? google

Homepage: google

Thank you for the info, I'm sure I will be visiting many times from now on.

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Location: Antelope, Ca.

How did you find this website? Google

Homepage: None yet

My daughter with ACC is doing wonderful..I gae her alot of input and still do it...We play at night she plays the guitar and i sing..she is smart and intelligent....want to write a book about these kids...any help will be benificial...

Knet Email

Knet Was here..
Greetings from Argentina.. bye

stacey Email

Location: Las Cruces, New Mexico

How did you find this website? Finding ways to help my son with his disorder

I am happy to see that there are alot of parents going through their trials with their children and I know that I am not alone in my jouney.  Best wishes to all of you

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Location: Denver, Colorado

How did you find this website? My mother found it through searching the web

My son was just recently diagnosed with c-ACC and feel completely overwhelmed. He isn't quite 6 months old and since 3 months we had been pushing for further testing since he just didn't seem on track like my older daughter (3). The doctor wasn't terribly concerned as he was on the large side and growing great, tracking toys, responded to voices and had good eye contact. I kept pushing though.

We were referred to our local early intervention services and started Occupational and Physical therapy before getting the MRI. He has responded great to the therapy making remarkable physical improvements. We meet with the pediatric neurologist in less than a week, but feel more hopeful than I originally did when the news was delivered by our pediatrician. He didn't have a lot of answers, which led us to search on the web.

I am in full information gathering mode and setting all the therapies necessary to help him along this journey. Your website is great and provides the hope so many newly diagnosed parents need. Do you have any experience with Interactive Metranome therapy? I saw a lot of information about it, but am looking for anyone who has had direct experience.

Thanks for creating such a great resource for this unknown journey we are now embarking on!

Jenny Email

Location: Fredericksburg, VA

How did you find this website? Goggle

Hello. I am 35 weeks pregnant and have just been told that my son has partial agenesis of the corpus coliseum and I'm hoping to connect with others who are experiencing the same thing.

Danielle Email

Location: Austin Texas

How did you find this website? surfing

I want to find a support group

Mindy Email

Location: Marion, Ohio

How did you find this website? Google search

Thank you for all the resources listed on your site.

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Jacklyn Dennis Email

How did you find this website? Just searching acc

My daughter is 10years old and she has ACC and was noted that their old be something wrong when I was pregnant with her. She is fine but she don't walk, talk, or setup. She also has CP. she is a very happy girl!

vicky mclellan Email

Location: st helens, merseyside, england

How did you find this website? looking for advice on acc

i have a 10yr old boy with acc, and find it really lonely as there is no one else within a 200 mile radius who seems to have this condition..x


message from Sandie (guestbook owner):

Hello Vicky,  Thank you for taking the time to sign the guestbook.  I am also the parent of a son who has ACC.  He is 18 years of age.  We live in the USA.  I am very sorry to know that you are finding it really lonely and that you have no support from people in your immediate area where you reside in England.  Please be advised that I will be sending you some information today through e-mail pertaining to ACC and Education & Social Skills Challenges as well as ACC support group information for your review.  I'm unsure of the specific advice you are seeking on ACC.  If you should have any questions or if you would like to share your concerns, or if you might be comfortable sharing more about your son...please feel free to e-mail me anytime. 

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