Site Map

 Home

For new families

Hydranencephaly
Information 


Our Rays of Sunshine

Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

Prenatal Diagnosis

For Grieving Families

Difficult Times Pt. 1: Taking Care of You

Difficult Times: Pt 2: What If?

 

Health Conditions

Welcome to the Hydranencephaly Information Front Page

Pages in this section:

About Hydranencephaly
(information about the brain in Hydranencephaly)

Diagrams of the brain in Hydranencephaly

Dr Shewmon's Article
Consciousness in Congenitally Decorticate children: "Developmental Vegetative State" As self-Fulfilling  Prophecy

Developmental Medicine and Child Neurology June 1999

 

   

Dr Bjorn Merker's paper

Consciousness without a Cerebral Cortex: A challenge for Neuroscience and Medicine

Behavioural and Brain Sciences 2007

Cause of Hydranencephaly

Hydranencephaly Fact Sheet

     

Myths about Hydranencephaly

"Research" Results
A comparison of the results of 5 informal surveys we've conducted.

Hydranencephaly Survey 2010
Survey report

     

A General Overview of Hydranencephaly based on the 2006 Survey

Overview Of Hydranencephaly Diagrams

Cognitive Development and Awareness in Children with Hydranencephaly
based on 2006 survey

Survivorship in Hydranencephaly 2012

Life Expectancy in Hydranencephaly
Dr Bjorn Merker, Guest Editorial in
Clinical Neurology and Neurosurgery March 2008

Neurological Glossary

For more information on Hydranencephaly:

1. Our Frequently asked questions database  You can also add your own questions. 

Note: August 2012: as this paper needs to be updated, it will not be online until that has been done (soon I hope).

2. Informational Brochures on Hydranencephaly 
Over the years we have compiled a number of other informational brochures that can be printed and shared. See links above.

  3. The book "Caring For Your Child" with Hydranencephaly. 

This is the 2nd edition of the book and is available in pdf format on cd. Each family of a child with Hydranencephaly is entitled to 1 copy for themselves and 1 to give to a professional free of charge. Further copies can be purchased for a suggested donation of $20.

For more information on the book

To order the book, please contact Barb Aleman

Please fill out our database in order to help us to get a better idea of the incidence of Hydranencephaly.

For support: 
1. Hydranencephaly Mailing list: This group is for all families, friends and professionals who care for a child with Hydranencephaly. It is a place to share joys, concerns and get information.

2.Hydranangels Mailing List: This list is for families who have had a child with Hydranencephaly die.

We are now on Facebook as well:
Rays of Sunshine Information and Support group
Rays of Sunshine Information Page
Rays of Sunshine Angels Group ( a safe place for those who have lost their child with Hydranencephaly to grieve and support one another

Go to: About Hydranencephaly for even more specific information on Hydranencephaly

 

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca