Please take a moment to introduce yourself to the community. Everyone here has something to share about Agenesis of Corpus Callosum. For the discussion boards, we ask that you keep your full name and location private.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat
I am a wife,mother,and life learner.I have a daughter with ACC.She is 11,beautiful,sweet,and obviously naive.I was on the special messages delivery at Yahoo,but I think I will try to check out where we are now.Can’t wait to “meet” everyone:)
my grand daughter has p-a.c.c
I am 31 wks pregnant with Kyle who was diagnosed with ACC and Dandy-walker variant. I am not sure what all of this means and would like to make sure Kyle has every opportunity to flourish. I also have a 22month old, Cody who has no neurological issues. I would like to network with other parents as far as what is working and what isn’t working. I would also like to have a support system and lend support as well.
Hi! I have a son who has P-ACC and I just like to learn everything that I can about it.
My name is Karen. My daughter is pregnant with her 2nd son. She and her husband recently received the news that their little one is dandy-walker variant and C-ACC. Since this is new to all of us, I want to learn about ACC, so I can be the support my daughter needs and also be there for my coming grandson, Kyle. I would love to connect with other grandparents.
I am a newly diagnosed complete ACC with arachnoid cysts and interhemispheric cysts. I am looking for an information and research opportunities that are going on for adults with this condition. It was discovered during the course of treatment for another unrelated condition, and it has explained alot of things that I found strange growing up. I wouldn’t mind talking with others about your experiences as well. Any help or information wi appreciated!
I have had mild seizures since I was a small child.
All of my seizures were treated by my parents as a behavior problem. As soon as I would start to have a seizure; my parents would pick me up and shake me and put me in my room for the day or the night.
I discovered in October 2006 when I was hospitalized for severe seizures… that I was born with agenesis of the corpus callosum. I am 56 years old and trying to learn as much about all this as I can.
I know my parents knew something was not right about me as a child; because I recall many hospital stays as a little one and one hospital visit when I was about 5 years old that I remember very clearly the Dr. saying he was going to help me to ‘take a nap’ so he could take a picture of my brain.
I repeatedly asked my parents and some of my other relatives about all this… and no one would tell me anything… in fact, when I asked my parents… I would get punished severely anytime I brought this up.
No matter what they did to me; I kept asking…
When I left home at age 18; I called the hospitals in the area where we lived and could not get any information from them.
So here I am… now, trying to learn as much about this as I can.
I am so honored to see all of you as parents… giving your children the very best you can… and caring about them the way that you do.
A father of a 4 year old son with C/ACC.
Hi ! I am the mother of Alyssa who was diagnosed at 3 months old with agenesis of corpus callosum. We have just recently found out that she does have 60% of the corpus callosum, but it is thin and she is microcephalic. I am interested in finding out more about the delayed development and what i can expect in the years to come. She is a happy and beautiful child, but I do feel that sometimes i am cheating her on the things that i could be doing for her. I feel like there is so much more I could do with the right resources-
Son (18 months) with C-ACC
Hi, I am BettyAnn my husband Steve and I have a wonderfully smart 14 year old son named Xander and a beautiful daughter who has P-ACC.
AMELIA IS OUR 11 YR OLD WHO WAS BORN WITH MANY DISABILITIES. She has an unbalanced chromosome translocation of 2p and 14q, Partial Agenesis of the Corpus Callosum in the anterior portion of the brain(P-ACC). Amelia also has Periventricular Leukomalacia (PVL), Cerebral Palsy(CP), Sensory Integration Dysfunction(SID) also called Sensory Processing Disorder(SPD),Pervasive Developmental Delay Not Otherwise Specified(PDD-NOS) which is a form of Autism,Epilepsy with Partial Complex Seizures under control,unfused thalami, partial cavum septum pellucidum and Global Developmental Delays(GDD).
Amelia also has pediactric sinusitus or sinus disease, frequent ear infections, she has had at least 3 sets of tubes in her ears, very low immune system, and chronic eczema outbreaks. She is easily startled by noises. Such as, balloons popping, motorcycles, loud cars, carnival rides, and big crowds overwhelm her greatly. Amelia is more comfortable when she is on a routine. Change is difficult for her. She has frequent outbursts of laughter that can go on for an hour as she stares at nothing. She is high energy and always on the go. Amelia likes to put all her fingers in her mouth. We think this is due to sensory issues.
Amelia has the biggest smile and the best sense of humor of anyone I have ever met. She loves music and is always talking about her Jesus. She is very inquisitive. She also has a very good memory. She is affectionate and loves her pet dog “Wishbone”. Amelia is a joy and a blessing to our lives and we are thankful for the opportunity to raise such a precious daughter.
I look forward to talking with other parents and exchange stories and day to day problems. Amelia has a website it is www.myspecialsweetpea.com
I have a son, Connor, who was diagnosed ACC though we arent sure yet whether it is complete or partial. He has 2 arachnoid cysts, and we are waiting to see what is between them.
He is a happy smiley little boy =) Im so very proud of him.
I have a grandson who will be two (2) at the end of the month with complete ACC.
My son was born C-ACC and were going to as many sites as we can find on this condition. We are hoping to find some families from Australia mainly as from previous support and messaging has been from afar as america etc and would love to hear from people closer to us in Australia.My son is 7 and has speech therapy,occassional physio and occupational therapy. He goes to school with his peers and two brothers. Truin is happy and very social.
I would love to hear from anybody who may have a child in their family like us.
Regards Joss…Joycelyn Smith from Norseman in W.A.'s goldfields.
My daughter, Serena has P-ACC and is going to be 5 years old.