What is Dandy-Walker?

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present. The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum and malformations of the heart, face, limbs, fingers and toes.

Our Stories

  • Charlotte

    During our 28th week of pregnancy, an ultrasound showed areas of fluid on our baby’s brain. We were told that she had Hydrocephalus caused by Dandy-Walker. We were given a description of her symptoms & wide & frightening range of possible outcomes. After 10 weeks of agonizing wondering, our beautiful baby girl was born. She has a shunt & some physical delays that she is overcoming. She is the greatest thing that ever happened to us! -Joel & Caryn

  • Ryan

    We went from being devastated by the in utero Dandy-Walker diagnosis to being filled with hope & optimism for our son & our future as a family. Ryan is such a blessing in so many ways. -Eric & Andrea

  • Mathew

    At 23 weeks we were told by our perinatologist that our baby would be the slow Uncle or Aunt & we should strongly consider terminating. We didn't. Today we have a beautiful, healthy little boy named Mathew. While we don't know what challenges the future holds our lives have been blessed by a precious gift. -Ryan & Shayna

  • Abby

    This is our vibrant little Abby. At 16 weeks gestation, we were given the option to terminate due to Dandy-Walker syndrome. This little girl has every chance to live a happy, fulfilling life. More education is greatly needed for parents & physicians, so every Dandy-Walker kiddo has a chance. Please learn & share to help more children, like Abby, light the lives of so many as she does today! -Rick, Leigh, & Grace

  • Tommy

    After finding out that our unborn child had Dandy Walker we were heartbroken! We decided that God was in control & no Doctor was going to decide the fate of our child. Two & a half years later he is happy, healthy, & thriving!! He is a miracle & truly a gift from God. -Tommy & Holli

  • Tesla

    Five years ago Tess was born with both Dandy-Walker & Hydrocephalus. It was scary for our family & we had no idea what to expect. Today she is a happy, healthy, five year old getting ready to start kindergarten! She's overcome some challenges and amazes us everyday with all she accomplishes. There is no doubt she can do anything she sets her mind to! Don't let anyone tell you what your child can't or won't do, many children with Dandy Walker defy their prognosis everyday! -Terri

  • Carter

    We didn't know about Carter's DW until he was 7.5 months old...Our happy baby with captivating blue eyes has grown into a sweet & tenacious boy who amazes us with his zest for life & determination on a daily basis. We don't know what the future holds for him, but we end each day knowing that Carter is happy & thriving & the best Carter that he can be. There's not much more we can ask for than that! -Doug & Lisa

  • Samuel

    Samuel entered the world with his ventricles dilated almost eight times the norm. He had seven shunt revisions and five other surgeries before he was 3 ½ years old. At eight years old, he is a bright, articulate little boy who will enter third grade this fall. - Brian and Lisa

For Families

Finding out you or your child has Dandy-Walker is a trying time for individuals and families.  Fortunately the Dandy Walker Alliance is here to help.  If you're looking for support, need advice, or just need someone to talk to reach out to us on Facebook or Contact Us

For Researchers

The Dandy-Walker Alliance is here to assist researchers with patient recruitment, screening and awards grants based on the scientific quality of research plans; the relevance of proposed research to our mission; the applicant’s qualifications; and the quality of the research institution and facility where the research will be conducted. In the case of Junior (New) Investigators, the quality and support of the research mentor also will be considered.

Topics presently being considered for funding include:

a) Promoting understanding of the etiology, epidemiology, diagnosis, pathophysiology, pathogenesis and disease burden of Dandy-Walker Syndrome

b) Improving symptom management and the quality of life for Dandy-Walker Syndrome

c) Discovering new or improved treatments for Dandy-Walker Syndrome

Upcoming Events in 2020

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