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My daughter just found out through MRI that her unborn daughter will have Dandy Walker Syndrome, ACC, Anechoic cyst in her posterior fossa, colpocephaly, the left ventricle of her heart is thickened, heart is in the center of her chest, and her kidneys aren’t functioning properly. I’m a nurse, so I’ve done the deep dive into educating myself on the MRI results. I’m scared to death for them all. Your video was truly calming although unfortunately we have many more concerns. I read through all of the comments and find it comforting that so many people lived a full life not even knowing. Best wishes to you and Ava. Thanks for sharing your video!

My daughter is 8 and her ACC symptoms seem to get worse. Specifically with emotional and violent outburrs! Bedtime is the WORSR 😢 😭

Hi, how can i connect you

I just want to ask whether you have come across Iain McGilchrist, who has a RUclips channel and is the author of 'The Master and His Emissary'. He is an expert on the split brain and has an important new theory that the right brain sees the whole picture while the left brain is about 'getting things'. He believed that in today's society the left brain is dominating and the right is underused. He also says that studies show that the corpus collosum is mostly about one half inhibiting the other rather than communicating. As Ada grows up, especially in the teenage years when social interaction becomes more complex you might find it interesting to understand his ideas.

Im 53 and I found out by accident in my early 40's. I was having severe headaches and my neurologist did a bunch of test and he was also shock that I didn't have trouble years into my childhood,the only thing I had was really bad headaches and insomnia all my life. But they need to

And thank you for making this video.... Not a lot on this..... Google just makes it worse

Hi everyone im 22 weeks and my baby is possibly diagnosed with ACC I have to go to a MRI to confirm this. But I'm wondering what yhe percentage of a child with this condition to lead a normal life? I know its broad but I feel like my doctor left me in the air on a lot of things

Thank you so much for sharing this it is giving me some hope, i too exactly like you experienced exactly what u did during an anatomy ultrasound im 22 weeks and 4 days and was asked to come back in for a second ultrasound only to get this news and have been crying all day , mri is on tuesday so praying for the best , thank you

Thanks for giving me the hope to keep my baby, my baby is also diagnosed of ACC!

My wife is 25 weeks, and our daughter Ember Marie has the same condition. I've been watching your videos for a few months now and you give us a sense of hope that our daughter will be fine. Ada is so adorable!

Hi, just wanted to confirm that what you did with this channel is definitely meeting your goals! We just got this diagnosis (with some other issues as well - a worse prognosis), and it is great to look at a good case scenario for a change. Your kiddo is amazing! The chance for ACC is 1:4000 so our babies are already unique :)

My daughter was born missing her acc she was also born with craniosynostosis and an inverted kidney. It's extremely scary finding out your child has all these medical problems thank you for your story

My Grandson, who is still in the womb, has been diagnosed with ACC , we are very very concerned. A lot of tests are being done. You’re story is informative and inspiring. Thank you.

Hii Our first daughter is Suffering from SMA which is life thretning & she is on the wheel chair,it’s a genetic disorder , Im pregnant with my second child & we have done all the necessary genetic tests which all came negative , baby is free from genetic disorders But in my 20th week ultrasound the dr told me the child’s Corpus callosum is missing, I have done MRI they could not see it in the MRI also My midwife has told me to go ahead & abort the baby Are there any chances of the corpus callosum would grow later in pregnancy ? Also what do u suggest shall I abort or go ahead with the pregnancy I already am in love with my baby but I can’t see him sufferring later in the life also with a already handicapped child

My ACC little girl is 5 years 4 months old now and I look forward to doing activities like this with her some day. Your videos are wonderful and informative. Thank you for sharing with the world that there's hope and wonderful outcomes and that abortion is not the answer.

I have total Agenesis of the corpus callosum and i didn't even know until I got checked for an unrelated issue.

My Daughter has Acc - She is 12, she was 33weeks. Acc- found at Birth. She has alot of Challenges. Mental Health, Autism Spectrum, Adhd, Learning Challenges. She struggles to write. Boces School. I still don't know much more. Be Strong , Mama. It's not your Fault. Keep Sharing your/ her story.

My lil one is missing apart of her brain and seeing this gives me hope. Can you please give me some advice

Im 19 wks and i just found out my daughter is missing a CSP(Cavum Septus Pellucidum) ❤️ im scared, im unsure, idk whats going to happen….if anybody has been through this or have any advice for me please ….😔❤️😭

Thank you for your story 🙏 ❤️

I’m 58 years old and found out in my 20’s that I had this. The neurologist was shocked. There wasn’t a name for it then. I’ve led a pretty normal life.

My daughter is 3 years old she has corpus callosum (acc) still she can’t sit, walk and talk😔

yup ( from Scotland ) I was advised to terminate throughout the pregnancy. Sam is now ten ;) and whilst there are problems that are arising he is so smart, physically perfect and has such a joy of life, thank yo for your video, even now, and Sam is fine, it touched me and brought back all those feelins when I was told Sams brain didn't completely form. I hope others in this situation see this.

Thank you so much for giving me hope! My son is 3.5 months old and he we were told he was missing this part of the brain. There is a small part of the CC but very thin so im not sure if it could be considered "partial" or a fraction of partial lol. Thanks for your videos.

Thank you for sharing your story about Ada🤍 We had a similar experience & brought back so many emotions. We also had a few doctors talk about termination while we were far along int he pregnancy. I recently had my daughter she’s almost 4 months old now & she has CACC. We found out during the 20 week scan & also did further testing & a fetal MRI. Thank you again 🤍🤍

Please like and share to spread awareness!

You are a strong and a brave mother ,, I’ve just had a grand sun with the same diagnoses , but with physical issues, but thanks for God for everything, we Muslims believe that God tests us in this life, when he find you patient, he will reward you, in this life or in the hereafter.

My 11 old son has ACC,he was born 24 week gestation. He is 5th grade now,but school has been so challenging for him,he also has no peripheral vision.he is in the IEP program in school.i don't know how his future will be,but just praying for miracle.

Hi, Does your daughter has any other Brian findings apart from ACC? Such as ACC PLUS?

I wonder if fertility drugs have something to do with it? My ex was taking them as well, became pregnant and our daughter was born with complete ACC along with gray matter heterotopius and schizencephaly.

Thank you Lindsey for sharing your story. I was born 1977 the technology was not there. In the year 2000 I had a black out episode and was rushed to the hospital. They did the scans than and that when we found out I also was born with CACC. I have been looking for groups of the same. I have been doing research for the past 22 years. Now at the age of 45 things are starting to happen where I have to alter my ways of living.

My nephew has ACC . He’s over 40 now. My sister wrote the book “ACC and Me”. It’s a children's book to help all ages understand ACC. All the best .

I’m currently 27 weeks pregnant and my son has been diagnosed with ACC through MRI and scan abnormalities. I have no idea what I’m doing, I don’t know what it’s going to mean for my son in his life. I’ve had amniocentesis and they are all normal so it’s nothing genetic, I had the infections test and that was normal. I’m so confused on what it could be! I don’t know why this has happened with all the results coming back normal. I live in the UK and they are deciding if we’re eligible for an abortion, i don’t have a clue what to do….. now waiting for a brain specialist to look over the results, will they be able to determine if it’s mild or severe from that?? Just need a bit of guidance💔

Thank you so so much for sharing. We just had a similar experience with a quite flippant 20 week scan, referred for a second scan which freaked us out big time and now waiting for an mri. Did Ada also have any ventriculomegaly at all? Sending love and thanks from the U.K. xx

Hey my son has acc as well but he's not hitting his milestone because they don't offer much support here in Jamaica so use RUclips to help me in physical therapy n social as well it's very stressful sometimes

You are saving lives ❤️ God bless you

ACC damaged in infants can walk ,

I recently found out I have this condition. I am 29 and was diagnosed this year when I was at emerge for something entirely different. I was told its uncommon to be diagnosed as an adult, the neurologist said I managed to have a pretty full amazing life despite missing a part of my brain. I at least am on the mild end of the spectrum of this condition, so it doesn't really affect my daily life, though now I understand why some simple tasks are incredibly difficult to me. I am glad there's video accounts of people who have this.

Hello I’m currently going through this situation I’m 23 weeks pregnant and given this diagnosis with my unborn son are you available to talk?

My brother’s unborn baby has just been diagnosed with this. I’m watching these videos trying to gain the strength to know what to say to him when I call him. Thanks for these.

I would love to chat with you I have a daughter who got diagnosed with ACC when I was pregnant with her

Ada is soooo cute. What a brilliant little lady ❤

Hi Lindsay my name is Sarah am from Vermont USA my daughter was born 6/8/2021 my pregnancy with her was normal or so I thought it was normal I ended up going to a high risk Obgyn when I was 23 weeks pregnant with her since my doctor found a spot in her brain that was blurry I went though a fetal MRI also and that when I found out that she had ACC she just had an MRI and I found out that it’s CACC with her only being 3 months now you give me hope that everything is going to be ok since it’s just the CACC

Thank you for posting your story. My brother was born with apparently born with CACC; however, it was not until his late twenties that he was formally diagnosed. During his younger life, doctors thought he just had a learning disability. Fast forward, he was in a car accident which allowed for several scans to be done on his head, and that is when doctors were amazed to discover his condition of the CACC. A living miracle.

I am 38 and found out I have complete a genesis of the corpus collosum

Glad I ran into your video my wife is pregnant and they just told us that our son that will be due soon has acc. I felt the same way you did cause it's just worse cases when I started googling this. Thank you for sharing 🙂

My son also has ACC he's 3 years old he hasn't spoken or walked yet

I have the complete agenesis of the corpus callosum and it sucks to have in my experience

I can barely hear you.

I'm 29 living in Belleville and have acc. I've always struggled intellectually.but never knew why,until years later.as I get older I do find the easiest tasks can be the toughest to accomplish