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"Aerodynamically, the bumblebee should not be able to fly.
But, the bumblebee does not know that so it goes on flying anyway."
~Mary Kay Ash

Your child has just been diagnosed with Hydranencephaly. For newly diagnosed children, this can be a very stressful time for parents and it is easy to become immediately overwhelmed. You are going through stages of shock, grief, rage, acceptance, fear and many other emotions.

The doctors seem to only have negative things to say about the baby you love so very much. We are not medical doctors and our advice should not take the place of medical professionals. We are just parents of children with hydranencephaly who have all been where you are and have some advice to offer you.

Please read all the wonderful information we have here, look at the pictures and videos of our amazing children, and feel free to contact any one of us via the contact tab. We invite you to join our Facebook support group.

Slow down, take a deep breath & Welcome to our family!

The All Things Hydranencephaly Guide
Please feel free to print our original guide for your personal use

Available in PDF

All Families connected with us are asked to:

Fill and submit the ONLINE VERSION of our official survey.


Or PRINT OUT the version LOCATED HERE
and return to Alicia Harper via email President@hydranencephalyfoundation.org
or via snail mail - Global Hydranencephaly Foundation
PO Box 1150
Seabeck, WA 98380-9800

New Families please provide us with this information
It will not be shared:

Parent Name:

Email:

Child's Full Name:

Mailing Address:

Child's Date Of Birth:

Childs Date of Death (if applicable):

Comments:

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