Hi, I am mother to a 10 year old daughter who has hydranencephaly. I just wanted to post and let anyone who visits this page looking for information know that there is hope!
There is also an excellent support group on Facebook, with over 200 families, who share lots of information, help, resources, and support with one another. The Children range in age from infants to 22 years old!!
The Facebook page is Hydranencephaly Family to Family Resource Page.
Also, please visit http://www.hydranencephalyfoundation.org to learn more about this condition and the children who live with it!
The Brayden Alexander Global Foundation for Hydranencephaly has recently been created to provide help, support, and resources also.
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