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29 Entries
Lisa Temperton 
08/05

Location: New Zealand

How did you find this website? Web

Comments:
My name is Lisa, and I have a beautiful 5 year old boy, who has complete agenesis of the Corpus Callosum (c-ACC), along with Asperger's type traits, and Haemophilia. He is my little Angel, but we have many challenges to keep his self esteem high and confidence high when the challenges are many in a state school. I guess I am seeking support from other parents out there who can help with telling me about resources to help educate my child given his uniqueness.  Many thanks, I hope I can also share some wisdom about my experience with other parents of uniquely wonderful children.

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Jessie Li Email
04/20

Location: Calgary

How did you find this website? Google

Comments:
My son was 5 days old and the doctor found he is ACC during NICU by MRI scan in Canada.He stay NICU for  2 days and let us go home with isolated ACC. He was scheduled many appointments with pediatrician and neurologist. Me and my husband are very  depressed and hopeless with this shocking news. I couldn't help tearing these days...

Thanks for you to create this website for lots of useful information! I am hoping to help him develop as an independent and be a nice guy in the future, although some developmental delays may occur.Easier said than done, a long way to go...
Good luck and thank you to all!
Bless...

Anyone could send me some helpful links and therapy information is very appreciated!

Kama Stogsdill Email
04/12

Location: Wichita,Ks

How did you find this website? google

Comments:
Looking for others families and or some local groups to help us understand ACC, my son was diagnosis as a young child and is now 22, they are getting ready to do testing on him to see what mental age he is, they just did a inpatient seizure study on him and I seem to be getting no answers as to why my son has daily headaches and has so many intestinal issues, I need help and I recently met someone else that has a 9yr old daughter that has been diagnosis with ACC and is looking for help and answers. Thank you in advance

Rosemary Grossman Email
02/22

Location: staten island n.y

How did you find this website? google

Comments:
Hello, i wrote earlier about my 10yr old daughter Bryanna. the page cut me off so i had to write a new one. Im sorry. I really want,to help my baby. I feel like i get the same response from every doctor, "she will be ok it is a normal disorder" I dont want to leave this alone. My daughter is such a smart loving child, i want to help her and make sure she will,continue to be okay. That she will grow up to be whatever she wants, and not have doors close in her face. My family thinks shes fine and i should leave it alone, but its easier said then done. Im the only one who sees my little girl struggling at,school everyday. Please if anyone can,help me. Thank you so,much. God bless our angels!!

Rosemary Grossman Email
02/22

Location: staten island n.y

How did you find this website? google

Comments:
Hello, i wrote earlier about my 10yr old daughter Bryanna. the page cut me off so i had to write a new one. Im sorry. I really want,to help my baby. I feel like i get the same response from every doctor, "she will be ok it is a normal disorder" I dont want to leave this alone. My daughter is such a smart loving child, i want to help her and make sure she will,continue to be okay. That she will grow up to be whatever she wants, and not have doors close in her face. My family thinks shes fine and i should leave it alone, but its easier said then done. Im the only one who sees my little girl struggling at,school everyday. Please if anyone can,help me. Thank you so,much. God bless our angels!!

Rosemary Grossman Email
02/22

Location: Staten Island N.Y

How did you find this website? Google

Comments:
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

Karen 
02/10

Location: Howell, Michigan

How did you find this website? google

Homepage: MSN

Comments:
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
02/03

Location: Georgia

How did you find this website? Google

Comments:
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
10/20/13

Location: Miami, Fl

How did you find this website? another acc website

Comments:
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 
08/22/13

Location: Beverly

How did you find this website? Web Search

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

http://brianonwriting.wordpress.com/2013/08/22/a-little-glimps-into-me-part-one-the-very-early-years/





Mark 
07/24/13

Location: Stoke

How did you find this website? google

Homepage: google

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

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Georgette 
05/03/13

Location: Antelope, Ca.

How did you find this website? Google

Homepage: None yet

Comments:
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...
Ty,
Georgie

Knet Email
02/20/13

Comments:
Knet Was here..
Greetings from Argentina.. bye

stacey Email
02/04/13

Location: Las Cruces, New Mexico

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

Comments:
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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Nicole 
12/11/12

Location: Denver, Colorado

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

Comments:
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!
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