Welcome to the Dandy-Walker Alliance Blog page.  This forum is a place for dialogue by advocates, families, researchers, clinicians and individuals affected directly or indirectly by Dandy-Walker and the issues that are important to our community.

2 Responses

  1. This is the best thing that has ever happened to me. I am so excited to find this site. I thought that I was alone with my daughter who was diagnosed with Dandy Walker.

  2. Hi there, I am a mom of a 14mth old who was diagnosed in utero as extreem DWS. After a rocky start, she is now healthy and doing great, and just took her fist steps yesterday !

    I thought I would pass this story along as further encouragement for some out there who may need it… I know how lonely and lost this diagnosis can leave you.
    It came to me from a mom who is around 20 wks, whos baby had been diagnosed as DWS @ around 15 wks. Two weeks ago they told her that survival chances were low, with dialiated lateral, and signifigant dialation of the 3rd ventricles.
    ————————————————————————————————————————————-( from the mom)…

    Hi! I wanted to send you an update! We had an ultrasound today and the doctor came in while the two technicians were scanning (he had been
    looking at the scans in another room) – he said “I had to come in and make sure they were scanning the right patient!”

    He said none of the ventricles are dilated anymore, the cyst is gone and the cerebellum is right where it should be and normal size! He said
    there is a very tiny cyst, but that it is nothing to worry about. We told him that it was a miracle and that we had been praying for a miracle and
    that so many other people were praying for a miracle for us… Praise God, we are so grateful!

    We go back in 4 weeks for another scan, because they didn’t get to check
    the heart like they wanted to… so we will continue to pray for good news and that everything will look good when we go back!

    Thanks for your emails and support and good thoughts! I have really
    appreciated them!

    I know this may offer hope to those still in the storm.
    Then again look at Emmy, we prayed for total healing-and the ultrasounds show that we didn’t get it.
    She was born with severe DWS, and she is fine.
    Miracles come in different packages.
    Anything is possible.

    Kathy Kitchen

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