Dandy walker syndrome

[@elissaj420]

I'm 33 and I have dandy walker syndrome. I was reading novels by the time I was four. I played sports, I'm told I'm eloquent in my speech. I started running and talking when I was 3. I never crawled or walked before hand and I never talked gibberish, I started speaking in sentences. Fast forward, I'm getting my MBA while being on the Dean's List. Hope this helps!

[@PaytonandMommytime]

Thank you for.sharing your journey...this is very nice to hear...my son was diagnosed also at 20 week invetro...he is now 17 months and he just started taking steps on his own, and he has been developing well..no clear words as yet, but his sounds have changed...They tried to get me to abort, but I chose not to, and glad I didnt...blessings.t o you🙏🙏🙏💃💃

[@elissaj420]

@@PaytonandMommytime I’m so happy to hear that! ❤️❤️❤️🙏🙏🙏 God Bless!

[@PaytonandMommytime]

@@elissaj420 Thank you so much..blessings to you as well🙏🙏🙏💃💃

[@christine875]

I'm touched my baby has been diagnosed today with randy walker and in so shaken lonely

[@robh226]

no, you are one of the "lucky" ones

[@mollylea2643]

I'm 17, and I have a Dandy-Walker Malformation. I was shunted my first week of life, so fortunately, I am cognitively on time. However, I had to have 6 shunt revisions my first year. I now have a complex VP Y-shunt, which was placed in July 2000. I walked at around age 2. I still have trouble with fine motor coordination with the two halves of my body. I am pleased to say that, despite this condition, I have been able to lead a normal life.

[@hannahaub9775]

Molly Lea hello i have the dandy walker syndrom too i come from german thats why i don't talk English so good please write me back!!!

[@mollylea2643]

Lena Rüssel Hi! Its great to hear from someone who also has this!

[@hannahaub9775]

Molly Lea omg yes can i write you do you have whats app?

[@mollylea2643]

Lena Rüssel I'm not sure.

[@hannahaub9775]

From where do you come?

[@mellokaymatic]

2021, this video gives me so much hope. I got this diagnosis at 35 weeks . I was so scared and angry at God but he’s been dealing with my heart and I’m praying my baby will be just fine . It’s inspiring to hear about your son and the other children in the comments. Pray God says healing is for the children , yours and mine . 🤍 I know I’m going to appreciate every milestone that much more . I can’t wait to meet my sweet girl . I hope I find your update . Thank you so much for posting this video .

[@mirsinbasel]

That gives us strength. How is your Situation today?

[@SkionMars]

I am the owner of this video. Our son is now 10 years old!! For years we have wanted to put another chapter on this video. Unfortunately we created a special account when we made the video and then couldn't remember any of the credentials when trying to get back in. With that said, we decided with the amount of views on this video, many of you, like we were, are looking for answers. So we decided to post a message and offer to anyone more videos of our son through our personal videos. Our guy just finished the school year with straight As so we are super proud of him. I'm so glad we gave him an opportunity! Our account is skionmars. God bless you all in your own unique journey. Now faith is the assurance of things hoped for, the conviction of things not seen. Hebrews 11:1

[@robertnkristenstephens6304]

Thank you for this video. I'm 23 weeks pregnant and at my appointment on Monday we found out our little girl has Dandy Walker Syndrome. I immediately started researching and it broke my heart at what I read. I've already scheduled an appointment with a specialist. I needed this video ❤️

[@cindiemoore2530]

There is hope.

[@mirsinbasel]

We are exact in the Same Situation. How is your Situation today?

[@katherinefarrugia3913]

Have a 12 year old daughter suffering from dandy walker syndrome she's 100%dependend have 2 VP shunts she dose not walk dose not talk she can't eat from her mouth but she is a joy to have I'm happy to be her mom and if you don't have a smile she'll give you one of hers 😊 even if she's disabled she is a joy to have

[@amberwalker5890]

katherine farrugia don't give up she can do it and I know she didn't do it I know because I'm one of them kids my grandmother and my family help me she can do it and I know

[@pamaustin6580]

😁😁😁😁😁😁😁😁😁 and God bless you and your 😇 daughter! 😍😍😍

[@user-raina_kh]

Hi katherine can I ask how ur beautiful daughter is doing now? And may I ask how she was when she was a couple months old! Was she like a normal baby or was she disabled from the beginning thank u❤Hope u all the best

[@katherinefarrugia3913]

@@user-raina_kh hi sorry for not replying to you i guess i didn't till now that I can reply . My daughter was always with Dandywalker but she looked like a normal child as baby but now she 15 and she looks that she's not normal . But she is a happy teen girl and very very clever .

[@user-raina_kh]

@@katherinefarrugia3913 Thank you for replying 🙏🏻💜 did she need her feeding tube when is was a baby or as she grew does she talk or hold her head up thank youuu

[@GamertasticBot]

My grand-daughter has Danny Walker Cyst variant. She is 8 yrs. a straight A student in gifted and talented and reads at a fifth grade level

[@amberwalker5890]

My name is Emily Walker and I'm 19 19 years old now it's hard yes but you can do it you can walk and talk at the same time you just have to try I have graduate from school high school and now I'm going to work program it's very difficult yes but I no kids out there who has it y'all can do it I know I'm living proof of it some people says oh I can't do that bulshit I can do more and more kids can do

[@ThumpWump]

I’m very sorry to hear what your pediatrician said that about you not having an Olympian. How incredibly crass and lacking in empathy. It’s so clear from your story how much each individual medical provider you met with impacted your outlook and emotions with their specific words and phrases. You are a resilient woman and the perfect mother for your son. I hope you and your family are well. Best wishes.

[@ItzelThuggy]

This video helped me a lot they just told me my baby might have this... I'm 38 weeks pregnant... I started reading online and broke down crying.. I hope my baby boy is okay and has a normal childhood like yours is.

[@mirsinbasel]

How is your Situation now?

[@stephanielohnes2092]

This is a great video. Thank you for posting. Our story is very similar to yours. I was pregnant with twin boys. Everything in my pregnancy was great till 28 weeks - one of the boys was diagnosed with DW variant. I researched on line and found extremely dismal prognosis. Two weeks later, I went for another ultrasound and the other boy received the same diagnosis. When they were born, they had an MRI and all was fine. :) They are now 8 1/2 and well above average - no symptoms at all!

[@Tucker1se]

Thank you so much for making this video. We're 28 weeks pregnant and our son was also diagnosed with dandy walker variant at 20 weeks. It is such a scary thing and something I constantly worry about. Thank you again!

[@knockitoffsam]

Thank you for this. I wept so hard before I picked up my phone and searched on KZbin. My daughter is 8 weeks and I'm so scared for her. She's meeting all her milestones now, but the doctors kinda put it to me like it's a waiting game. But, thank you. You have given me what I needed in this hour.

[@user-raina_kh]

Hi can I ask how your daughter is doing and what type does she have does she do every thing she should thank u ❤

[@knockitoffsam]

Alex alex (Sorry if my comment is redundant I don’t remember much about the video) my daughter has Dandy-Walker Syndrome, a hole in the back of her brain and she has to take speech and occupational therapy (fine motor skills like writing and buttons are a task for her) she also has problems with retention in school but she’s doing great! Not one seizure, which the docs were very worried about. She has a behavior specialist who is optimistic and a neurologist that refers her for MRIs. I don’t know how well the information has aged when you Google this, but it was scary 4 years ago. If you don’t think your pediatrician is taking this serious enough, look for another one. My daughter’s team is great and any little concern I have they’re willing to make the necessary referrals for her. Just keep praying and keep faith! Also, I tend to shortchange my daughter and she ends up being able to do a lot more than I credit her for. Don’t do that let your baby explore but it’s ok to worry I’ll worry forever lol

[@user-raina_kh]

@@knockitoffsam Thank you for replying and it is a scary feeling my baby is almost 7 months shes a beautiful baby girl shes so smart and alert she loves food and loves to play but still not sitting maybe its coz its early. I knew she had dandywalker malformation 9 days before I had her it was a nightmare I was dying inside out. Couple months later I feel a bit better learning there is hope from different stories. But my biggest fear is if she develops hydrocephalus that's so scary for me coz her mri at 21 days old showed she has CSF intensity fliud where her cerebellum should be she has minimal cerebellar tissue.plz pray for me❤me can I ask did u face any eye problems thank u

[@knockitoffsam]

Alex alex I cant remember any eyes problems but my baby did have an abnormal MRI and had to constantly be checked because her head was big and they were scared she’s suffer from fluid on the brain as well. I will definitely pray for you ❤️ my daughter hit her milestones in her own time so give your baby time and don’t stress!

[@user-raina_kh]

@@knockitoffsam ❤🙏🏻

[@ronirwin1855]

I just watched your story. Sort of reminds me of myself. I was diagnosed at four months old. My mother was giving me a bath. And noticed that I had no soft spots where my temples are. She immediately took me to the local emergency room in New Jersey after some tess, I was transported to C.H.O.P. in Philly where I underwent surgery for a shunt. I have lived a very normal life. I was involved in all kinds of sports. I have religiously roller skated and speed skated since I was four years old. When I was 16 I became a firefighter/EMT. Shortly after getting all of my qualifications, I was on a cardiac arrest. Ambulance call unadministered c p r. As I was performing compressions, I felt something move behind my left ear. When I was relieved from my duties I went to push the pump located behind my left ear. It wasn't there. Needless to say, I was rushed back to the same local hospital and then flown to Philly. My mother had kept in close contact with the sergeant all those years. He was retired but told my mother on the phone that when I get to Phioly no one is allowed to touch me except him. He he came out of retirement and performed my surgery. I have never had any issues since. Within six months I was back to my normal life. I am now 51 years old and I still roller skate play pickleball and still work as a firefighter/EMT. i know my story is different from most. I pray daily for all those who have this diagnosis. Thank you for letting me share my story

[@JayJay15150]

Thank you for making this video, my older brothers wife is 5 months pregnant and they just found out that my new nephew has dandy-walker. It is unclear as to the severity of the the situation but of corse as any family would we are prepared for the worst. this really gave me the hope i needed to lay my teenage imagination to rest. good luck to your son!

[@elizabethadams2113]

He is so adorable and seems absolutely perfect! The human brain is incredible and doctors don't know everything! Thank you for sharing your story and I wish you and your family a lifetime of health and happiness! God bless you all:)

[@katesbowers]

Thank you so much for posting this video. I am currently 26 weeks pregnant and we were told the exact same thing a little more than a month ago. I went through a ton of tests, blood work, fetal MRI, and ultrasounds already and that was just the second half of January. It's been an emotional time for my husband and I. This video has given us a sense of hope that she may be okay. Thank you!

[@hannahs7809]

I am currently 25 weeks and I was told that my baby has dandy Walker when I went for my 21 week ultasound .I am taking alot of blood tests and different tests .and I took an MRI to get more information. I'm praying that it's not so severe and that things will be okay !

[@wynonabieneman7985]

Oh my goodness your son is beautiful! And your right, he's doing Great :) It was very nice of you to put this video out there for other mother's to be ♡ Congratulations on your next little gift from God. xox

[@minhbui116able]

I just want to say thank you for sharing your story. I found this video in the darkest time when I was told my daughter has dandy walker, on top of that she also has hydrocephalus. Fast forward to today (almost three years later), she's beautifully grown, speak, walk, run, sings...like any child her age. Thank you so much for showing me the silver lighting in such an unpredictable time. For anyone going through this, just know that not every case is the same. We as parents are meant to guide our children, we have no control in their destiny or journey. So just be the support they need. Again, this video is so powerful and inspiring; thank you for being vulnerable and open because it has truly helped me ( and my family).

[@yekcoh2]

Thanks! This gives us some hope. I'm 30 weeks pregnant and our baby boy was diagnosed with Dandy Walker Varient, delivering at ChOP in January 2021.

[@hannahs7809]

Congratz!! Mazal tov !! May u have an easy delivery

[@hannahs7809]

I'm due in march .I git the same information a month ago ,been taking alot of tests ! Hoping for the best and trying not to go crazy !

[@mirsinbasel]

how is your Situation today?

[@PaytonandMommytime]

I went through the same things you did. My son is 17 months now, and started making steps by himself at 16 months...he is amazing...He is still being monitored by specialist....Thanks for sharing your story....I never had a crazy thought about my baby boy...I am glad I did t listen and abort him as they were suggesting...👍👍🙏🙏...Your baby is adorable..

[@christineharris9283]

our son was also diagnosed at 20 weeks in 2009. He is now 3 and has always been advanced. we started off with 9 doctors following him including genetics. they could not find a cause, nothing. he is so smart and so mobile. completely different than what we researched as well. so good to know there are others like us out there! thank you so much for posting this.

[@xxxsydxxxx]

When I was born (1968) they didn't have the technology to feed all the speculative prognosis of the present day. My parents were none the wiser when it came to Dandy Walker which fortunately meant that neither was I. Looking back, yes I crawled longer than the other kids. My parents never got to see me stand up. As they recall it "...one day you were just running". Were things more difficult for me? I think they were but I didn't know it was because of a space inside my head. It made me try harder. Result: I no longer have an interest in competing as I have won my entire life.

[@devkimulchandani4946]

dear as u said ur milestones were dely so that is thr also any effect in height n weight in dandy walker variant

[@xxxsydxxxx]

+Devki Mulchandani , Hi I am not sure if that is a question or statement. I was the second smallest kid at school(the smallest kid was a dwarf) and i think it would be fair to say that I was more immature than the other children. I did grow to be taller than average and matured ... somewhat.

[@devkimulchandani4946]

+DVB thks for replying and it was a question my son height and weight is very less he is turning 3in june but looks like 2year only otherwise he is very active. so any other information which u would like yo share or any suggestions

[@danbrikco143]

+djm hi, i will have at think about it and reply as soon as possible . "Variant" , whilst implying that there are differences between it and "syndrome" does not offer an insight into the potentially limitless forms of variations, each one with its equally unique affects.....

[@devkimulchandani4946]

+ČUVA BOGA ok dear thks for replying . May I know how u r related to dandy walker

[@sarahstroud6021]

I know this is an older video but I have a son with dandy walker variant. He is 11 now and seems perfectly fine but has a few balance problems and coordination problems. I always blame myself for this and I think what did I do or what didn’t I do. It drives me crazy sometimes the guilt I feel at times. My son is the light of my life and I wouldn’t change my circumstances though because it has made me grateful for a lot and humbled me alot😀My sons cerebellum is slightly smaller and he has some excess fluid in his 4th ventricle and something called an arachnoid cyst. Thank you for this video and may God bless you and your family 😀

[@tennesseesdaughter7427]

Sarah Stroud just continue to show gratitude 🙏🏽 God makes no mistakes and our children choose us! My son chose me and I’m a better everything because of it!! He’s my only kid, senior in high school and falls on the autism spectrum 💙 Keep loving on him, as I’m sure he loves on you too 💕

[@My_Vacation]

My son was diagnosed at 1 month with cerebellar hypoplasia and a cyst of the posterior cranial fossa. They said it looked like Dandy Walker syndrome. He crawled a little, started walking at 1 year old. Coordination is a little broken, a slight tremor of the hands, slight problems with speech. If outsiders did not know about the diagnosis, no one noticed. At the age of 11, we had an MRI scan and wrote that we did not have a cyst, but only cerebellar hypoplasia. Neurologist's recommendations: swimming pool, learn to ride a bike. To live a normal life. Now he is 13. I have recorded for swimming since September

[@sandyturner1309]

Thanks for sharing. I am 19 weeks pregnant and our baby was just diagnosed with Dandy Walker. We are hopeful after watching your video.

[@arileshay3606]

Thank you so much for sharing your experience, I’m 6 months now and got the diagnosis at my 20 week ultrasound as well. This gave me hope. ❤

[@Delacari]

How are you and baby doing now?

[@kristinaclay2287]

What a positive message to those in search of information! Thank you for taking the time to put this out there. Good stories DO exist! God Bless!

[@yatyas3307]

Great video. Thank you. We adopted our 4 year old daughter from Korea at 9 months. Her medical records from Korea indicated a normal brain. About 1 1/2 years we started noticing that she wasn't walking normally and that her speech was a little delayed. Although she's been seeing a neurologist and been in therapy for almost a year, we only heard the term Dandy Walker 2 weeks ago. Looking into the limited info on the net has scared the hell out of us. This "static" conditions seems to progress.

[@margaretrosemakoni7096]

Praise God. Thank you for sharing your story.

[@YuGantBrown]

Hi Im Anthony Brown and my son has Dandy Walker mild and is 1yrs old as I speak and while in the process of him being born me and my fiance couldnt find anything positive on this situation and while searching. SO I WANT to Thank you for the positive outlook on this suitation and yours and it help me understand that my son can have a full life thru all the negative information on the net.And also he has surgery on his head for build up fluids and it was a success because he had got the incision.

[@vickijacks56]

Thankyou so much for posting this. You are so right, there is so much negative information out there and it is wonderful to read a positive and well considered piece. Thank you.

[@bamafaninky861]

I was born in 1968 as well. Nothing really showed up until I was 6. I drove a go-cart under a coal truck. Then headaches, crossed eyes, loss of balance and threw up every morning. Put in shunt at 7 after seeing 13 different doctors. Graduated, got a degree, married, and two kids. Then trouble started at 46. Had to have shunt replaced. It damaged spinal cord. Numb on left side. Still working but use a cane. Again at 50 second shunt installed. Still working but harder. Blessed all my life to what it could have been.

[@madi3914]

Wow that is definitely the cutest kid I've ever seen. Beautiful family:)!

[@laddinajohnson6726]

Hi thank you for this information! My Son has dandy walker and he’s 6mths old now. Blessings to you and your family❤️

[@roberteggleston4088]

I'm a Dandy-Walker Variant, discovered by an MRI at age 57. Effects of this condition for me have been very mild, possibly: slight dyslexia; slight bi-lateral, multi-time base coordination limitation. These have not prevented me from having a normal life. I was a high school athlete (three sports). I am a college graduate (AB, MA, PhD) and have a professional career.

[@Gee5425]

Kenny Coultrap if you "got it" from a head injury, then you don't have dandy walker syndrome, you have a head injury. DWS is due to the brain not forming correctly while developing. Your brain developed fine, you might have a head injury, or have caused some kind of brain damage from your car accident, but you don't have DWS from your car accident. That's why the medical field/insurance isn't backing you, this is not the condition you have.

[@Ivette51979]

Gracias por.compartir, tengo un niño de casi 3 años, le ha sido.diagnosticado variante de dandy walker, y ha sido duro, pero tengo muchas esperanzas, y ya casi camina.

[@usooalo3b09]

Thank you❤️ This video gave me hope. Lovely child and family truly blessed

[@christinesims2333]

I’m a 48 year old female I have dandy walker variant hydrocephalus I have lived a perfectly normal life I just seen this and wanted to let you know that it’s not always disability causing I have a son and he is 24 was born with no sign of the defect .

[@mirsinbasel]

That gives us strength.

[@actionhudson873]

1. It would be nice if commenters would think before posting snarky bullshit. Clearly this couple received a terrifying diagnosis. I know this because my wife and I received the diagnosis of "Isolated Dandy-Walker Variant" at 20 weeks. This woman's only purpose for making this video was to help other expectant parents who may have received a similar diagnosis - not to "show herself off". Seriously, what a dick thing to say. 2. We had the additional advantage of having a connection who got us hooked up with one of the very best neonatal neurosurgeons in the country at Johns Hopkins. He said that this condition has nothing to do with Dandy-Walker, and that it's merely "Isolated Hypoplasia of the Cerebellar Vermis". With Dandy-Walker Syndrome, there is usually a lack of a vermis altogether, and there is always hydrocephaly. So, really, the three things that are important are: 1) there is some formation (however small) of the vermis that connects the two halves of the cerebellum, 2) there is no hydrocephaly, and if there is mild hydrocephaly, the brain is able to regulate. Often, the formation of a substantial cyst on the 4th ventricle is important to look out for, as it is common with malformations and hypoplasia of the vermis, 3) there are no other abnormalities, especially in the heart. Good luck to anyone who may read this. If the only abnormality that's noticed in the 20 week ultraultrasound is an undergrown cerebellar vermis, and there are no chromosomal issues - I'd recommend proceeding forwards as though it was a normal pregnancy and monitor potential hydrocephaly in future ultrasounds.

[@TheBella2u]

He’s adorable and perfect. Best of luck to you.

[@yenluong5023]

Thanks for making this video. What a beautiful words of encouragement.

[@elissaj420]

I was in college level reading and English classes in Elementary School, they wanted to skip me a few grades. I started our science club program and I was at post graduate levels in the sixth grade. I never found out I had dandy walker syndrome until I had a head injury at the age of 12. (Completely unrelated). I just want to give hope to you and others, so I thought I would share! God Bless!

[@user-raina_kh]

Can I ask you which type you had

[@ashleyrabenau76]

Thank you we just been to a specialist doctor and they say that our babt looks like he has it. It was the encouragement that I needed

[@pysen73]

Thanks for sharing! I was about 20 weeks with twins when we were told one of the girls did not have that part of the brain. We went to a specialist who told us to get an selective abortion of her, because she would be a "vegteble".. Not able to move, eat or talk... Doing that we would have risked also the life of the other girl. Today my girls are 19 months old. They are about 6 months "younger" coming to motorskills and speach, which is not a big problem. Doing therapy they´ll get there :)

[@joywells4385]

This sounds just like what i was told 24 yrs ago. I now have a very healthy 23 yr old son who lifts weights, rides motorcycles,and is as active as any other young man his age. When he was young I began to believe he recieved the wrong diagnosis due to his "normalness"and at the age of approx 16 he had a severe concussion(he got this due to wreck a 4 wheeler) the cat scan showed a (in the docs words)a large dandy walker. We never held him back.i am proud of the man he is!

[@christinharyati3406]

thank you for the sharing, my son also diagnosed wth dandy walker syndrome when my pregnancy 32 weeks, i hope my son will grow up like your son,..

[@Cherry-op1kx]

Thank you for your share! God is good. I’m glad your son is doing fine. I had to look up some research because I’ve been so nervous of our son having dandy walker/ mild posterior fossa cyst. And right now he’s about 5 and a half month old and with this whole COVID 19 it’s a little harder to have check ups with the doctors and all of the delays. But so far he’s doing fine he’s trying to crawl and lifting his head up for what’s supposed to for his current age. I have faith in him. He’s a strong little man. Again Thank you for your share and you baby is so cute! I hope we do get well as he grows. 🙏🏻

[@stephaniemason189]

This will be my second baby with Dandy walker. My first girl had dandy walker malformation. My boy now just got diagnosed yesterday at my 20 week scan with dandy walker variant

[@mirsinbasel]

Hi Stephanie how is your Situation now?

[@jamesequus]

thank you for posting. My wife and i were told that our daughter would be an invalid, then that there was no issue, then that we should prepare for a funeral or a care home. We were also told that had they caught it sooner, we could have gone to have a late term abortion in a neighboring state to save ourselves some heartache. we were devastated and at a loss. we ended up praying more than we ever had in all of our lives. Our daughter turned a year right before Christmas and

[@christine875]

My baby is now one year sometimes she can sit on her own but for a short time she was diagnosed today with dandy walker...I didn't have anyone to talk to buy thank you for the video it gave me hope ...

[@MsHannahwang]

really beautiful video. you're clearly both great parents and he's lucky to have you. i wish your family the best

[@ArianaTheGawd]

This video definitely gave me hope. Thanks for sharing surely gave me a peace of mind. God bless you and your family

[@KionnaP1]

I wish I would have seen this sooner. God bless you and your son is beautiful!

[@alessiamisceo3287]

thank you for sharing this video. my child have similar dignanosy as your little one had too at that time. i am 23 weeks now i am frightened and as you did say in this video there is a lack of information as the consequences seem to vary very much. this video had given me a hope your child is beautiful. i would like to know how is doing now that has grown up a bit . and if i could ask you few more question about the anomaly they found that time. God bless your family

[@randomthingswithalisa743]

I was born in 2004 and I was Bron with dandy walker and it took lots of surgery to keep me alive and I still have dandy walker and I'm 13

[@وهمالأقنعة-ظ7ث]

I was born in 2004 too.. 😭 I hope you will be okay.. ☹️

[@jojomekkattil7402]

So we just found out today that our baby (20 week checkup) might have a possible sign of Dandy Walker...my wife's heart dropped as well as mine hearing the word "syndrome" has a negative connotation. I'm trying to put up a brave face for my wife but I'm really scared it's our first so hearing your story makes me feel a bit better but like you said every story is different. I see it has been almost 2 years since this video any current update you wish to share?

[@joanmckinnon2368]

That baby is just adorable so cute

[@patmitchell7884]

He's adorable, y'all have been blessed

[@SLisaPizza]

I read the title at first as "Daddy Walker Syndrome". Later I reread it and I'm glad I clicked it.

[@ernieg1415]

You have a normal ( what ever that is supposed to be ) cute little boy, I pray that God will keep him in his hands.

[@patriciabogue6811]

He’s beautiful!

[@caseycook3909]

...cont part 2...the doctor told us he has Dandy Walkers. She said he will not have a normal childhood and will have mild retardation. We have seen no indication of this, he is about to crawl, he grabs things, he says "dada", he is even standing against furniture. This came out of left field, this was not expected and what the doctor told me I am terrified for my son. This just happened 4 hours ago. We were told to call the neuro surgeon tomorrow to get an MRI and that the fluid needs to...

[@mirsinbasel]

We are in the same situation. All your comments give me strength. My wife is 23 weeks pregnant. The doctors are already talking about stillbirth. Does anyone have any experience? Best wishes from Switzerland

[@TheDivari]

Thank you so much for posting this!

[@102create]

A beautiful boy you were given ❣️❣️❣️ May God bless him even more ❣️❣️❣️

[@Getlkasper]

God Bless you and your wonderful family!

[@vladikapahomije]

Thank you for posting this video! Our 3 months old daughter has just been diagnosed with DW. There is no excess fluid in the brain, the vermis is not entirely missing but is misshaped.The information we have received at the hospital is very limited and we have been told that the only thing we can do is intensive physical therapy, which we have started with immediately. I would appreciate if you could tell me what you have done in terms of treatment with your boy and whether there are any other options available apart from physical therapy... She is very restless at all times when awake and it gets especially bad during nights. We are heartbroken as it looks as if she is in pain and distress but there is noting we can do to help her calm down. Did you experience these symptoms as well?

[@deonnahedwards1470]

Really needed to hear this thank you

[@jamesequus]

cont. she remains healthy. she has hit all of her milestones and i cant imagine our lives had we have decided to terminate the pregnancy. to all you parents out there who may get some very upsetting news like this, remember, this is not a death sentence for your child and health care professionals can very often be wrong.

[@juanangelcarrero1009]

Yo también parezco esta malformación congénita, después de un derrame cerebral, hace 6 meses me hicieron una ventrículostomia para drenar el exceso del líquido en el cuarto ventrículo, pero parece que no fue suficiente y ahora me dicen que me tienen que volver a operar y colocarme una válvula de derivación.😓

[@theither666]

Thanks for sharing your video,it gives me hope

[@anafail8558]

My sister has dandy walkers she cannot talk or walk. But she does love to rip up paper.

[@amberwalker5890]

I mean that is very hard believe me I know how it feels when I was 2 years old they said I want to walk or talk and I'm doing both she can do it and I know she can

[@MohammedChannel123]

God Bless! so inspiring!

[@vjdonavanik8439]

Thank you for sharing your experience.

[@lynettesargent591]

I am 53 and have Dandy Walker Syndrome. I didn't find out until I was 29.

[@TheFrogmaiden]

Beautiful video. I will have to share with some people.

[@chastitywashington4214]

Thank you so much it did provide some comfort, God Bless you.

[@caseycook3909]

...cont part 3... be drained. Any advice on this would be must appreciated.

[@devkimulchandani4946]

dear hw r u n ur son hw is he doing now

[@aldrinbautista8832]

Thank you and bless you miss

[@caseycook3909]

Has your son received an MRI or ct scan? If so, is that area of the brain still missing? Did the doctors tell you he had fluid buildup in the base of the of brain? If so, did you have it drained? Any information would be great. We just got back for the ER, our 7 month old son fell and had a huge bruise on his forehead, so we took him to the ER just in case. Our son got a CT scan just to rule out any fractures from the fall. The CT scan revealed fluid buildup at the base of the brain, ...

[@user-raina_kh]

Hi can I ask how your son is doing?? Does he have dandywalker and which kind and did he need a shunt

[@christine875]

Thank you for the video..God bless you

[@thepsycho07]

My daughter have dandy walker syndrome. It catched by ultrasound what do I am so confused

[@johannabjorklund4154]

I'm 37 years old and have Dandy Walker Syndrome cyst. You can ask me about everything about it. I can tell you all that I know about it. I had a surgery when I was a month olf in 1978.

[@hannahaub9775]

Johanna Björklund hi i have a lot of questions cause i have it too but i didnt know it but for one year i became the information because of pain

[@kaytarracorrea25]

My nephew has it 🖤 he had the cyst too he's also deaf but he is so stinking funny he's very little he's about to be a year old in January. He's started to sit up and he army crawls

[@bridgetsimone-fq7xm]

I found out at 4 months pregnancy in and out of genetics

[@mirsinbasel]

We are in the same situation. All your comments give me strength. My wife is 23 weeks pregnant. The doctors are already talking about stillbirth. Does anyone have any experience? Best wishes from Switzerland

[@user-raina_kh]

Hii,Can is ask how your beautiful son is doing?

[@donovanconstable1058]

Thankyou so much for sharing this

[@gailrodgers3079]

What an amazing child. I trust he continues to do well.

[@juanmartin.bregazzi]

Thanks a lot for this.

[@nowvoyagerNE]

no update?

[@志瑜杨]

So cute!

[@BuddyBurks]

Thanks so much for sharing

[@chandramajett1290]

Thank you so much for this

[@virginiaubaldo5576]

Hi im from peru, this video make me feel so happy with hope, I had felt scared all the time with the information on internet specially on my lenguage theres no much information, thank you. God bless you !!!

[@susanmolefe6275]

Hi beautiful people my name is Susan Molefe i have a son with dandy walker and he's 12 I'm struggling a lot and facing a lot of challenges he's using a wheelchair and not having a proper house toilet is very hard for us anyone who can help us with anything we will appreciate ur help

[@mirsinbasel]

When did you get the prognosis?

[@dognoob6220]

I have dandy walker Syndrome and. Hydrocephalus

[@carlosromero713able]

my son also has dandy walker syndrome he is going to be 7 in dec. 2013 and is in school and is doing great we also found out when she was about 22 weeks pregnent good luck

[@LionGoddess1]

cute kid!

[@jcuticelli]

Thanks for sharing. I shared your link on our blog "dandy walker hope". feel free to google search. I can't leave an web address as a comment. We have a similar story!

[@nusipepalepaio7762]

whats the problem here? he seemed fine?

[@anafail8558]

My sister has dandy walkers she cannot talk or walk. But she does love to rip up paper.