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Hydranencephaly
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Difficult Times Pt. 1: Taking Care of You

Difficult Times: Pt 2: What If?

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Book: Caring for Your Child With Hydranencephaly

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New survey for 2010

Contact Barb

Printed Materials

Fact Sheet

Fact Sheet Brochure

Frequently Asked Questions

FAQ Brochure # 1

FAQ Brochure # 2

FAQ Brochure # 3

FAQ Brochure # 4

FAQ Brochure # 5

FAQ Brochure # 6

FAQ Brochure # 7

Myths about Hydranencephaly

Myths Brochure

Dear Doctor Letter

Welcome to the Hydranencephaly Information Front Page

Pages in this section:

About Hydranencephaly
(information about the brain in Hydranencephaly)

"Research" Results
Results of the informal surveys we've done

Dr Shewmon's Article
Research paper 

Cause of Hydranencephaly

Hydranencephaly Fact Sheet

Neurological Glossary

For more information on Hydranencephaly:

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

The FAQ is also in pdf format (need adobe acrobat to read it) or as a series of 7 brochures you can print out: 

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

The fact sheet and Fact Brochure contain the same information but just in a different format. The Fact Sheet is in Word format, the Brochure is in pdf format.

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: cmalloy38@sbcglobal.net

Payment can be made at our Paypal account: HydranChildren@yahoo.com

Or, via snail mail to:

Conrad M Malloy
506 Stone Ridge Drive
Lansing Mi 48917-2478
Residence: (517) 321 5161
Cell: (517) 488 4563

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. Please note: due to previous problems with people joining the mailing list who didn't have any connection with Hydranencephaly and then causing problems, we ask each person who applies to reply to a letter from one of the moderators telling about your interest in the list. We do not do this to be an exclusive club, but for the security of all on the list.

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

Go to: About Hydranencephaly for 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