What is Dandy Walker Malformation ? Any Other People living with this Rare Condition ?

The Dandy-Walker complex is a rare congenital intracranial malformation that comprises a spectrum of abnormalities of the posterior fossa which are classified  as:

(a) Dandy-Walker malformation (cystic dilatation of the 4th ventricle, complete or partial agenesis of the cerebellar vermis and an enlarged posterior fossa)

(b) Dandy-Walker variant (cystic posterior fossa mass with variable hypoplasia of the cerebellar vermis and no

enlargement of the posterior fossa) and

(c) Megacisterna magna (enlarged cisterna magna with normal cerebellar vermis and fourth ventricle).

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The Dandy-Walker malformation is a term which r e p r e s e n t s  not just a single  entity, but several abnormalities of brain development which coexist. This disorder is a congenital brain malformation typically involving the fourth ventricle and the cerebellum.

Dandy-Walker malformation is frequently associated with other intracranial anomalies such as agenesis of the corpus callosum, holoprosencephaly, occipital encephaloceles and ocular abnormalities. Extra-cranial anomalies include polycystic kidneys, cardiovascular defects, polydactyly and cleft palate. 

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Genetic factors have a major role in the etiology of this condition. Dandy-Walker malformation may occur as part of Mendelian disorders and chromosomal aberrations. Environmental factors including viral infections ,  alcohol and diabetes  have   also be en suggested to play a role in the genesis of Dandy-Walker malformation but the evidence is uncertain. 

In the absence of a recognizable syndrome a recurrence risk in  subsequent  pregnancies  of  1-5%  i s suggested.

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Dandy-Walker malformation is recognized by an enlarged posterior fossa, cystic posterior fossa mass communicating with the 4th ventricle and varying degree of vermian hypoplasia/agenesis. In this condition, borderline to overt ventriculomegaly and other neural/extra neural defects are generally present.

 Retrocerebellar arachnoid cyst is a less common and more benign anomaly than Dandy Walker malformation because in these cases the underlying brain is normal. The cerebellar hemispheres are not separated by a cystic mass, rather displaced en-bloc.

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I have been asked for a Termination of Pregnancy .

Is there Any Other people/family/babies living with this Rare condition ?

You would certainly be glad to know that you are not the only one suffering from this condition.

As it is a rare brain anomaly, some people have already started a group support in several countries not only to raise awareness with DW but to help each other to cope with the disabilities on a daily basis .

*Please drop a line if you are aware of any existent or new groups regarding Dandy Walker.

  Please state the Country, Town, and Language.*

To add your comment : either click the following link or scroll down the page  http://www.dandywalker.eu/archives/2011/08/10/21768048.html#comments

Thank You for your Support.

Let's Give HOPE - LIFE - and same CHANCES to our kids.

"Les Enfants Dandy Walker" :

Support group in French for Parents/Family/People with Dandy Walker and Associated illness and Malformations

http://www.dandywalker.eu

 Un PIN Gratuit pour Tous! Servez-vous, et affichez le ou bon vous semble, sur votre blog, en signature d emails, sur un TShirt...Laissez aller votre imagination et ensemble donnons plus de visibilite a cette maladie invisible!! Ensemble donnons l espoir aux personnes souvent isolees par les handicaps

Comments

[OrLa]

“Our journey with Dandy Walker began back in 2007. Kirk and I found out I was pregnant with our first child in March. We were so delighted and couldn’t wait for the arrival of our first child.
It was then that we heard the words “Your child has a cyst in the back of it’s brain, we need to refer you.”

On the 28th of October my waters broke. I was 37 weeks pregnant.
Ben Edward Young all 6lb 2ozs of him.

That night after everyone went home and it was just me and Ben I held him and told him I would never doubt him, I would be there for him for the rest of his life, I would never listen to people telling me he wouldn’t walk, talk or meet his milestones, me and his daddy would encourage him every step of the way.

Kirk and I are so grateful for our little miracle and have completely changed as people now that we are his parents. I want to take this opportunity to tell all expectant parents not to listen to everything your told or read about Dandy Walker as no one has all the answers yet.

Some parents are told to terminate and that breaks my heart, because Dandy Walker kids can have struggles in their lives but they are still our children, our precious miracles.
Thank you Ben for 3 wonderful years with you and many more to come, our little dancing man xxx”

Kirk and I would like to welcome you to our website. We promised we would build a website about Dandy Walker to show everyone that no matter how hey may be feeling, there is always hope. We will be here to try and support you and to enable others to share their experiences with you.

[Eric]

support group in English
www.facebook.com/pages/Dandy-Walker-Alliance

The Dandy-Walker Alliance, Inc. is a non-profit corporation committed to educational and informational activities, programs and publications and supporting non-partisan research and events to increase public awareness for Dandy-Walker Syndrome.
We support all efforts to determine the cause(s) of, find the cure for and to ameliorate the effects of Dandy-Walker Syndrome.

Adresse:
10325 Kensington Parkway,
Suite 384,
Kensington,
MD 20895
Maryland
United States

[Atenas]

support group in Spanish www.facebook.com/groups/sindromedandywalker/

"Alejandro es un niño de 5 años, con Síndrome Dandy Walker e Hidrocefalia diagnosticados desde nacimiento.
Su desarrollo fue completamente normal hasta que en un recambió valvular (sep 2009) le detectaron dos Papilomas de Plexos Coroideos (tumores cerebrales benignos) lo que le causaban presión intracraneal. Actualmente tiene poco más de un año con Lesión Cerebral severa.
En mayo 2011 comenzamos la terapia ABR en Montreal, éste blog es sólo testimonio de la rehabilitación de un niño con parálisis cerebral..."
by Atenas from Mexico