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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. 

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The Syndrome

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...

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.

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Your support comes in many different forms, some of the most common ways people get involved are:

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Get your State involved

We’ve launched our 50 State Inititive with the goal of having every State in the United States declaring the month of May Dandy-Walker and Hydrocephalus Awareness month.
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Plan a Fundraiser

This can be anything from a small Bake Sale or Car Wash to a large Walk/Run or other community event
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Consider making a financial donation

The Dandy-Walker Alliance is run completely by volunteers and the majority of our revenue is from private donations.

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We have ensured that our finances are completely transparent and have recently earned Guidestars Exhange Partner status. Guidestar is a national organization for Non-profits and publishes, via the Guidestar website, free information on any NFP that is registered with them.

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Our Stories

Joel & Caryn

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!

Eric & Andrea

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.

Ryan & Shayna

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.

Rick, Leigh, & Grace

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!

Tommy & Holli

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.

Terri

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!

Doug & Lisa

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!

Brian and Lisa

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.