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Ashley Sheets' Fundraiser:

For The Love Of Our Kids

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Ashley Sheets via Crowdrise
April 23, 2012

"Death is not the greatest loss in life, The greatest loss is what dies inside while still alive..never surrender !"  See more

BENEFITING: Dandy-Walker Alliance, Inc.

EVENT DATE: Jun 09, 2013

Ashley Sheets

THE STORY:

I am hoping to raise funds for Dandy Walker Syndrome. We lost our precious angel of light Ethan in June of 2011 due to Dandy Walker Malformation. I believe his memory will live on in the lives that we touch and I would like to spread our love for him across the world!

What is Dandy-Walker Syndrome?

 

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 area of the brain between the two cerebellar hemispheres (cerebellar vermis), and cyst formation near the lowest part 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 and vomiting, 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 area made up of nerve fibers connecting the two cerebral hemispheres (corpus callosum) and malformations of the heart, face, limbs, fingers and toes.

Is there any treatment?

 

Treatment for individuals with Dandy-Walker Syndrome generally consists of treating the associated problems, if needed. A surgical procedure called a shunt may be required to drain off excess fluid within the brain. This will reduce intracranial pressure and help control swelling. Parents of children with Dandy-Walker Syndrome may benefit from genetic counseling if they intend to have more children.

What is the prognosis?

 

The effect of Dandy-Walker Syndrome on intellectual development is variable, with some children having normal cognition and others never achieving normal intellectual development even when the excess fluid buildup is treated early and correctly. Longevity depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten life span.

What research is being done?

 

The NINDS conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding abnormal brain development and offers hope for new ways to treat and prevent developmental brain disorders such as Dandy-Walker Syndrome. For more info please check out              Dandy-Walker Alliance, Inc.
10325 Kensington Pkwy.
Suite 384
Kensington, MD   20895
comments@dandy-walker.org
http://www.dandy-walker.org
Tel: 877-Dandy-Walker (326-3992)

Thank you in advance in any support you show!

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