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Review for Global Hydranencephaly Foundation, Seabeck, WA, USA

Rating: 5 stars  

When our daughter, Charlie, was diagnosed with Hydranencephaly we were given no hope whatsoever. No hope for her to live, no hope for her to have any quality of life, no hope that she would be aware of her surroundings or even to know who we are as her parents. We were discouraged from seeking out information online as her doctors were afraid it would lead to "false hope". Eventually, I began searching and found GHF. It was one of the best decisions I have ever made. We were instantly welcomed and accepted as family. Any questions, fears, concerns or triumphs we had were answered with enthusiasm. Charlie is now four years old and remains a fighter, she has scared us so many times, but with the help of other families and their input I feel confident that any situation that may arise can be conquered with the knowledge and insight of our amazing Hydranencephaly family. The support is unlike any other, we are so blessed to have such an amazing group of people in our lives. Hydranencephaly is a devastating diagnosis, but with a foundation such as GHF, it is a miraculous experience that few people have the privelege of understanding. We love our "bee" families so wholeheartedly, that each one has become an integral part of our lives.

Role:  Volunteer