National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Walker-Warburg syndrome



My child was diagnosed with Walker-Warburg syndrome. He is unable to sit, stand, walk or speak and has poor head control. What can we do to help him?

There is currently no cure or treatment for Walker-Warburg syndrome. Management is generally only supportive and preventive. Individuals who develop seizures are typically treated with anticonvulsants. A few children require surgical procedures, such as shunting for hydrocephalus or correction of encephalocele. Physical therapy can be offered to aid in development or prevent worsening of contractures; however, the benefit of this has not been established. Feeding usually needs to be monitored and in some cases, a supplemental nasogastric or gastric feeding tube may be necessary.[1]
Last updated: 3/23/2011

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

Warm regards,
GARD Information Specialist

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  1. Jiri Vajsar and Harry Schachter. Walker-Warburg syndrome. Orphanet Journal of Rare Diseases. August 3, 2006; 1(29):http://www.ojrd.com/content/1/1/29. Accessed 3/22/2011.