Dandy Walker Syndrome
Dandy-Walker is the best-known birth defect of the cerebellum, but not the only one. The medical community has this amazing confusion about what true Dandy-Walker is - William Dobyns MD
image by: Jan Brooks-Stead
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Making Connections
The Coles had never heard of Dandy-Walker, and in the weeks that followed they searched for an organization that could provide information about it and connect them with other families raising children with the syndrome. When they didn’t find one, they put their respective areas of expertise to work...
A year after their son was diagnosed in utero, the Coles created a website, Dandy-Walker.org, and posted abstracts of studies about Dandy-Walker from peer-reviewed medical journals, along with additional information and resources. They wanted other parents who Googled “Dandy-Walker” to find more than they had.
Resources
Dandy Walker Alliance
The Dandy-Walker Alliance is run completely by volunteers and the majority of our revenue is from private donations. As we move towards entering the research arena your continued support is crucial. We have ensured that our finances are completely transparent and have recently earned Guidestars Exhange Partner status.
A Rare Case of Dandy-Walker Syndrome
Dandy-Walker syndrome (DWS) is a rare congenital malformation characterized by hypoplasia of the cerebellar vermis and its upward rotation and cystic enlargement of the fourth ventricle. The clinical manifestations include psychomotor retardation, ataxia and hydrocephalus.
Dandy-Walker Syndrome Information Page
Dandy Walker malformation is diagnosed with the use of ultrasound, CT and MRI. Prenatal diagnosis of Dandy-Walker malformation is sometimes made by ultrasound or fetal MRI.
Matthew Tavormina: A Medical Miracle
Finally at 22 weeks, Alyssa underwent a fetal MRI and her physician gave the worried parents a definitive explanation for Matthew’s developmental problems. He explained that baby Matthew had a condition called Dandy-Walker, a rare congenital malformation involving both the cerebellum and the fourth ventricle.
Meet the 'warrior princess' with rare syndrome who is defying all expectations after her parents were advised to terminate
Every day that goes by the Isaksons continue to be amazed by their daughter, who they refer to as their 'warrior princess'. Because if the Dallas couple had listened to the advice of the doctors, two-year-old Abby would have never been born.
Our Dandy-Walker Life
Did you know that 1 in 2500 babies are born with Dandy-Walker Syndrome? Unfortunately, a percentage of these babies will become angels within the first six months of life. Researchers estimate one person out of every 30,000 lives with Dandy-Walker.
Special Needs Spotlight: Thomas
If you could say something to the mom who is just starting on this Dandy Walker journey, what would you say? What would you say to yourself if you could go back in time?
Making Connections
The Coles had never heard of Dandy-Walker, and in the weeks that followed they searched for an organization that could provide information about it and connect them with other families raising children with the syndrome. When they didn’t find one, they put their respective areas of expertise to work...
The Embryo Project Encyclopedia
Walter Dandy was a neurosurgeon in the early 1900s in the US who studied the cause of the enlargement of the head associated with what researchers later called Dandy-Walker syndrome. In 1910, Dandy reported that he had observed a thirteen-month-old female with a fluid-filled sac, called a cyst, causing the enlargement of the fourth ventricle, as well as anomalies in the cerebellum.
NORD
Dandy Walker malformation is diagnosed with the use of ultrasound, CT and MRI. Prenatal diagnosis of Dandy-Walker malformation is sometimes made by ultrasound or fetal MRI.
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