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Review for We Are R.A.R.E. Inc., Orlando, FL, USA

Rating: 5 stars  

I am so greatful for this organization! October of 2015 my daughter age 10 at the time had a grandmal seizure. Doctor told me everthing is ok and it sometimes just happen to people once, no big deal she doesn't need meds. A week later same thing happens and now absent seizures. No one can explain it. we get an admit to the hospital and finds out that she was born with bilateral open lip schizencephaly......we were blown away and didint know what to say or do. We were told its little to no information and they could only treat her symptoms on what to come. I prayed vigorously. I real don't like facebook but I knew it had everything. I typed in schizencephaly and found my second family, my refuge, my outlet and support from We Are R.A.R.E. I can't imagine life with this group!

Role:  General Member of the Public