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Juliet P.

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2 reviews

Review for Global Hydranencephaly Foundation, Seabeck, WA, USA

Rating: 5 stars  

I want to thank Global Hydranencephaly Foundation for all of their dedicated and hard working people. They truly have been a God-sent for so many families struggling to find a positive side to this very grim diagnosis. My personal favorite is all the love and support GHF shows for it's "children" and families!
Thank you for all of your hard work, dedication and love that you show daily!

Role:  Volunteer

Review for Global Hydranencephaly Foundation, Seabeck, WA, USA

Rating: 5 stars  

When our adopted daughter was 7 weeks old we got the diagnosis of Hydranencephaly! The Dr wrote her off his book immediately!!! All he said to us, while looking at our healthy 7 week old, was that she would not live to see 1 year of age! She would never show emotion, she would never recogize any one she is ever around!! She smiles so much now, laughs out loud, and KNOWS who we are!!! We were told by friends NOT to look up Hydranencephaly on line!! All the information was horrible, very grim, very much not a friendly tone at all!!
Then we found our FAMILY from the Global Hydranencephaly Foundation, who are always so supportive, who have so much information, who offer advice whenever anyone asks for advice. They share the good, the bad and there is always someone who has been through what you are going through!! This wonderful group is our family, and they go through the same things we do! We have a much better understanding ofhow to care for our special needs, hydran daughter! We learned alot from them about the type of equipment we would need for her, in the future! It is so wonderful to ask questions and know we have an answer coming soon!
To be totally honest, we never make a decision on anything concerning Serena, until we get advice or confirm it with our Hydran Family first!! They are awesome and have been our backbone for the last 3 1/2 years! :)

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Role:  Client Served