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Review for Alternating Hemiplegia of Childhood Foundation Inc, Southfield, MI, USA

Rating: 5 stars  

When I was told my daughter had Alternating Hemiplegia of childhood, I did not believe it. I googled information about this condition and it did not sound like my child. I was confused and frustrated. I contacted AHCF through email. i told them about my child and her symptoms. I received an email and we scheduled a phone call. A leader in AHCF called me and took her time to listen to my daughter's story. I explained her episodes and symptoms. i was reassured that these were all part of AHC. My questions were answered and we were welcomed into this group.
I was happy to learn of a Facebook support group and made wonderful friends. We3 can ask a question and everyone wants to help out. I never feel alone with the frustration of this disease. My daughter started to ask why her body did this. She was happy to hear that others go through this too.
We attended a family meeting this past summer. We felt so welcomed and excited. My daughter was able to meet other kids like her. We learned so much information that weekend. most of all we learned we are not alone. We also learned we are part of a wonderful organization that wants to find answers and hope for all of our children.

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