I don't think most people realize the value of a great support network. Having family, friends, and brothers/sisters by circumstance to lean on in both happy and sad times makes life that much more easier to travel through.
Global Hydranencephaly Foundation created and maintains a family-to-family support network for families who have had, will have, or have a child given a diagnosis of hydranencephaly. Sometimes the diagnosis may change depending on what doctor sees what when they look at the brain scans, but once these families are part of ours... they're family forever. We fight together, cry together, lean on one another, and look to one another for the strength and guidance that will help us give our children the best quality of life possible.
These families are the true experts, when every doctor is ready to turn their back and give up when a child has been diagnosed. Babies have been saved from termination, mothers and fathers have been given hope, and children have come and sadly, sometimes, gone.. but defied all odds against them, all along the way.
If you, or someone you know, is given a terminal diagnosis for their child that includes hydranencephaly, severe hydrocephalus with brain damage, or "simply" been told that the child "does not have a brain"... please contact me directly by emailing President@HydranencephalyFoundation.org There is no limit to what our families are capable of, together.