Site Map


For new families


Our Rays of Sunshine

Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

Prenatal Diagnosis

Health Conditions

About Us

Meet other families:

Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base



Rays of Sunshine Site Map


Definition of Hydranencephaly
Hydranencephaly Information Front Page
Diagram of the Brain stem
Diagram of the brain in Hydranencephaly
About Hydranencephaly
Cause of Hydranencephaly
Neurological Glossary

Hydranencephaly Information Network documents

Hydranencephaly Fact Sheet
Myths about Hydranencephaly
Research Results (comparison of 5 surveys)
A General Overview of children with Hydranencephaly (based on 2006 survey results
Overview of Hydranencephaly Diagrams
Cognitive Development and Awareness in a child with Hydranencephaly
2010 Research results
Dr Shewmon's PaperConsciousness in Congenitally Decorticate children:
Dr Bjorn Merker's paper: Consciousness Without a Cerebral Cortex
Life Expectancy in Hydranencephaly: Guest Editorial by Dr. Bjorn Merker
Survivorship in Hydranencephaly

Our Rays of Sunshine


Angel Ari
Angel Ben
Angel Blake
Angel Breanna

Angel Caleb
Angel Chase
Angel Chase

Angel Chelsea
Angel Cobyn
Angel Daniel
Angel Elizabeth
Angel Emily
Angel Heather
Angel Isaiah
Angel James
Angel Jason S.
Angel Jayden
Angel Johanna
Angel Kayda & Angel Kayda
Angel Lara

Logan N


For New Families

A word of Encouragement
What doctors say and what they may mean

Words of Wisdom
Dear Doctor letter

Prenatal Diagnosis of Hydranencephaly

Options you may be given
Experiences of families with prenatal diagnosis
What will life be like for a child with Hydranencephaly
Resources in Caring for a child with Hydranencephaly

  Cortical Visual Impairment
  Optic Nerve Hypoplasia

Sensory Stimulation Links and Resources
  Sensory Stimulation Activities
  Choosing a Toy

Feeding a child with Hydranencephaly
Feeding and Positioning
Tube feeding

Tube feeding experiences
Oral feeding experiences
Feeding tips and tricks
Feeding Glossary





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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.

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