Agenesis of Corpus Callosum Member Introductions


#61

Hi my name is Christina and I am the mother of identical twin girls with complete ACC as well as other issues. Their names are Hailey and Hannah. I want to learn as much as I can about their health conditions and so I am joining various groups on the web in search of some answers…


#62

family member with condition


#63

My son Christopher ,15, has hypoplasia of the Corpus Callosum.He has severe learning disabilities and is non verbal.We are British but live in the Netherlands.


#64

My son Elijah was born with a very rare disorder, called Nasal Aplasia (absence of the nose and blockage of the nasal passage ways) affecting primarily the face and nose. Nasal Aplasia has only a few cases reported in literature. The causes of Nasal Aplasia are unkown. Occasionally, affected individuals also experience abnormalities of the brain, such as the Corpus Callosum, he also has a Lipoma (fatty tissue) of the Corpus Callosum. Elijah has his own WEBSITE AT: elijahashby.zoomshare.com


#65

Hi, i am the best buddy of a little gal, and well, i wanna know and learn as much about this as i can. we live in the minneapolis mn area. so if you are near by, please let us know, and let’s see what we can do for some group fun and support. thanks for your time!!!


#66

My name is Mistry and my son Christopher age 2 has Agenesis of Corpus Callosum. I love to hear stories of others that have this condition. My son also has Trisomy 8 Mosaicism.


#67

I was born with agenesis of the corpus callosum. Its complete agenesis of the corpus callosum. I didn’t know i had it till i was 18 and now i am 32. I guess i want to connect with adults who have this disorder and who have been discriminated in school or in the work place


#68

It’s just me, Kyle! 35 with C-ACC…


#69

Hello. My name is Robin. My son is 8 months old and has complete Agenesis of the Corpus Callosum. We found out about his condition in utero, thinking he had hydrocephalus. After he was born it was confirmed what he actually had. We were not given much information except that there is most likely going to be delays and issues, only we dint know what they will be. Of course when you are told that your baby is missing part of his brain, you are in shock and cant comprehend that they dont know what to expect. I have taken a leave of absence from work to be at home with him and work everyday with him and ensure he is meeting his milestones. Thus far we have been lucky. I know that doesnt mean anything though. As I have read and met others online with this and the delays are often more prevalent in school age. I will continue to work hard for him and be his advocate, and continue to look for others with his condition ( possibly in the same age range). We also have had genetics tests and he doesnt have any other genetic issues related to this disorder. I would love to learn more about everything associated with this.


#70

Hi,
Our (almost) 10 year old daughter has dysgenesis of the corpus callosum, hydrocephalus, seizures, and lupus with kidney failure. Just hoping to connect with other parents who may be going through some of the same things as we are.


#71

My son will be 6 in July and has ACC and was diagnoised with autism too. I want to know if that is common to have both?


#72

They just diagnosed my baby with Isolated ACC and we would like to get some support and information!!


#73

Hi! I am interested in the condition agenesis of corpus callosum because my now thirteen year old son was diagnosed shortly after birth with complete acc. I want to talk to other parents who have a child with complete acc.
Best Regards,
salisbury


#74

I am currently 8 months pregnant and the baby was diagnosed with agenesis of corpus callosum. I would like to get some info about people who are dealing with this same situation.


#75

Hi ! My son, Anthony, is thirteen years old. He was diagnosed with complete acc at birth. He is quite low functioning, has seizures which are controled with medication, and has some autistic behaviors. He is a sweet affectionate child.
I don’t know anyone with a child that has complete ACC.
I met one other child many years ago at Easter Seals. This child seemed to function quite well. Other than that, I had never spoken to anyone except doctors that even remotely knew anything about acc. Recently, one of my adult daughters that works in finance has come into contact with many families that have family members with acc or are themselves living with acc. She helps them with estate planning etc. My daughter told me about the convention in Dallas and I am looking forward to attending.
I am amazed to read the reports of many members that are successfully living with acc or have loved ones that are doing so well. I am encouraged by that and wish everyone well.


#76

35 1/2 weeks along and by accident discovered that my baby probably has ACC during a sonogram yesterday. I have to wait for the fetal MRI to confirm the diagnosis and discover the severity. Need people to talk to about this condition, very heartbroken.


#77

Hi, about three weeks ago we went in for our routine 20 week ultrasound . . . at that point I was told with a targeted ultrasound that my son has C-ACC. We’ve done an amniocentesis now, and now that he has no chromosomal abnormalities. My biggest question right now is what syndromes connected to C-ACC can be ruled out now that we know he has no chromosomal abnormalities and which ones we still need to be watching for. When I looked at the National Organization for Disorders of the Corpus Callosum I saw a large range of syndromes and conditions and I just want to rule out some if I can.

Thanks :slight_smile:


#78

I’m the mother of a 3 years old boy with P-Acc


#79

Hi,
I am the mom of a 2+ old darling boy named Ravi with C-ACC. We discovered it immediately at birth - due to a sonogram that showed a gap between the right & left venticles of his growing brain (23 weeks). I had many genetic tests (blood, amnio, etc) and they all came back negative for other major disorders.

Thankfully, we have not had any medical scares (seizures, surgeries, etc) but also have consulted & tested eye, endocrin, neuro-surgery & genetics to rule out major issues and get a bench mark for future growth.

Ravi is a thriving, happy, loving and funny toddler. He is considered very high functioning for ACC. His only major delays are sensory (textures, especially food), feeding (nibbles & spits out, chews oddly, still on formula for most of his nutrition), attention (not easily interrupted; doesn’t respond to name) and communication (random babbling, very few words and poor pronunciation). He also is very systematic with organizing toys (lining up, piles in doorways, playing with the sliding glass doors insteas of toys, etc) and chews on everything (except food). He is not potty trained and I have a feeling that it will be a long time before we hit that milestone.

On the flipside - he hit every other milestone early or on time - with the exeception of talking. He loves physical play (park, balls, slides). He is very advanced in the areas of problem solving, can figure out complicated things like remotes & laptops, knows his alphabet/colors/letters (just doesn’t repeat them) and shows a natural talent for the piano and other classical music. He’s also very engaging and will begin ‘conversations’ with you by smiling or giving direct eye contact until you respond. He’s quite affectionate and is happiest with a blanket, bottle, book and cozy grown up lap to enjoy them on.

We work with a number of early intervention therapies including: speech, occupational & behavioral. I’ve had him in a combiation of these since 10 months. ACC instantly qualified us for state funded programs, which pays for all of our therapies. Many of his symptoms fall into the Austic Spectrum (ASD) and we qualify for additional ASD-specific programs, school, support groups and other local resources.

My only concern with this is that I have to be a real advocate and educator to the therapists who may not fully understand the differences between ACC and Austism. Many have not seen ACC before or only in combination with much more serious disorders. High functioning kids are rare since most are not diagnosed until later in life.

This can be a challenge because unlike autism, ACC kids have healthy brain matter with lots of room to learn. There is research that shows that the right & left side of the brain can learn new information at the same time and the early therapy teaches the brain to work as a ‘team’ later in life - very ying & yang with strengths & weaknesses being covered by the ‘better half’.

For those of you with new babies - early intervention and ABA therapies are hugely successful for kids with ACC. For best results, early interviention should take place before the age of 3. There are many programs that are specific to 1-2 year olds. For information - look under Austim support programs or Easter Seals/United Way for local resources. I have seen tremendous progress in just the past 6 months and look forward to more.

I wish each of you and your families the best - the support groups have been a huge help for resources, ideas and just the opportunity to ask questions or vent.

Warm Regards,
Jenn & Ravi
Florida


#80

My granddaughter has c-acc. Sheis 6yrs old she just graduated from kindergarten. ya ya!!!. Her problems are not as bad as we thought. Oh I forgot My name is Esther. My husband and I have guardianship of Bailey. She still can’t talk real good and her fine motor skills are not that good. I need all the input I can get for her so I can learn more about her.