September 23, 2012
I found this organization on Facebook after my baby girl was diagnosed with PMG. She had many many issues and other brain abnormalities but PMG was one of the few things that her doctors had a name for. Only it was a name I had never heard in all of my life. No one else had ever heard of it either. So I started looking online for any info about PMG that I could find. Basically all I found said that it affects everyone differently. I felt so alone and let down. No one could tell me anything about how this would affect my little girl, not even the doctors. But at least I found an organization like this full of people that were experiencing life with PMG. It gave me hope that living with PMG was not only possible but manageable. It was encouraging to see pictures and stories of how other families were coping with this. Unfortunately we only had 8 weeks with our beautiful girl. But at least we weren't feeling so alone in it.
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When was your last experience with this nonprofit?
MY ROLE:General Member of the Public