My grandson, 19 months old, was diagnosed with DWV at about 20 weeks. He has developmental and visual issues. I want to learn as much as I can so that along with his mom & dad, we can help him develop to his full potential.
Hello,
My name is Brandy. I have and eleven month old beautiful baby girl named Gracie. She was diagnosed with Dandy Walker at 2 days old. She has had to have four surgeries because of fluid on her brain. She has a cyst on her brainstem and is missing almost all of the left side of her brain. She also has what is called sczencephaly on the right side of her brain. She didn’t start holding her head up until she was about 5 months old. She is now sitting, trying to crawl, walks a little with support, talks up a storm(even though she has a hearing defeciet) and is very active and extremely happy. She is just the best baby. She both developmental and physical therapy twice a week and they have said that she will catch up and be running around in no time. I just can’t wait to see that.
My son has been diagnosed with Dandy Walker Variant and I want to interact with other families that have children with Dandy Walker.
My youngest DD was diagnosed w/a DW cyst at 6 months old. She has had numerous shunt revisions, but now at 21 is functioning fairly well. I would like to find out if any other DWS w/shunts have head pain. Hers is severe and unresponsive to most things, although nerve blocks are beginning to help.
I discovered I had DWS after suffering a concussion two years ago. I recently graduated from law school and am preparing to pass the bar exam and begin my professional life. I hope to learn more about the condition. Specifically whether the condition can suddenly cause symptoms later in life and whether I am at greater risk to pass the condition to my children.
I also want expectant parents to know that while many children deal with major difficulties as result of DWS there are also a number of us who live our lives symptom free. Knowledge is power!
my 20 year old son has Dandy-walkers syndrom
I am a dad of a 4 year-old girl who was born with dandywalker variant. She presents with all the symptoms of the condition.
My daughter was diagnosed with DWV
my son Kyler has dws, he is 21 months old and has many conditions that go with it, I am interested to find out if other people with dws have similar symptoms.
My sister is about 22 and a half weeks pregnant. She has just found out that her baby has dandy walker syndrome, along with other complications. I don’t know anyhting about the condition and I would like to be there to support her. I live in NC and she lives in FL. Any kind of input would be much appreciated.
Hi,
I’m a 30 year Mum to be who has just found out my unborn baby has Dandy Walker variant. I know nothing of this syndrome & could really do with some help, support & info as the hospital have left us to it without any info! Thank you.
my name is bob my wife died in dec.of 05 and i still canot get past it we were married for 43 years and i feel so lost.
Hi, My granddaughter was diagnosed with Hydro a few days before she was born. After she was born the neulogist said she has a variant of DWS, although she has some of the classic symptoms she doesn’t have them all. We have come to understand that there is really no way to know how it will affect her, if at all. Right now she is doing really well, didn’t require a shunt and had a PT evaluation yesterday and so far developmentally she is fine. They will re-evaluate her at three months. I’m am here to find out other peoples experiences with this and what resources are available to families of children with DWS.
Hi, I’m Trisha, Mommy to Bryan 9 months who was born with Dandy-Walker Syndrome and Hydrocephalus. He had his first surgery on January 11, 2007 to put a shunt in, so far no problems with it.(knock on wood). He gets physical therapy every week and can now roll over, sit on his own, hold his bottle and feed himself, smiles, laugh and pesters his 2 big sisters when they play on the floor. Looking forward to getting to know everyone.
Hello I join this group for support i had a son that pass because of dandy walker and i want to help as well as get support from all of you that know what i might be feeling
My wife and I have a prenatal diagnosis of DW and are trying to learn more
Hi! I’m Katie and I’m new to this group! I was just told yesterday that my 3 month old son was diagnosed with Dandy Walker Syndrome…I am still trying to figure out what it is, so if anyone has any good information I wouldn’t mind! 
I am trying to figure out if sagittal craniosynostosis and Dandy Walker syndrome go together as a fluke or if its a syndrome of some sort.
Hi all, My name is Tracy and my Daughter Megan has Dandy walker and Hydro. She is 8 years old and in the 3rd grade. Megan was supposed to be our Vegatable, HA! She proved them wrong. Megan is paralized on the right side of her face and is deaf and blind on the right side as well. She has low muscle tone on the upper right of her body and lower left. She is a great kid. I hope to make some connections here.
In my son’s case, he was born with the 4th ventricle of the brain missing but it grew in during his first year or so… no surgeries involved.
I’ve had headaches, dizziness, balance problems, lots of memory problems, nausea, body aches too
flu like symptoms often in my life