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Mickie M.

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1 reviews

Review for International Rett Syndrome Association, Cincinnati, OH, USA

Rating: 5 stars  

Our daughter was a perfectly healthy typical baby, who hit every single milestone for one year. She lost all of her skills at one year of age, and we began a heart-wrenching journey from specialist to specialist looking for answers. In 2001, she was finally diagnosed with Rett Syndrome. Her neurologist comforted us by directing us to IRSF and promised us that with IRSF's help, we would regain lost hope and our daughter would thrive. IRSF did give us hope. Within weeks we were connected with experts in the field of Rett Syndrome, we became aware of the latest cutting-edge research, and we received passionate support that changed our daughter's life. Through IRSF, I have discovered my own passion of advocacy, and I can't imagine a better channel by which to help other parents whose lives are touched by this devastating disorder. IRSF has been my strength, my hope, my support and my community to help my daughter and to help our family. I cannot imagine life without this organization.

Role:  Volunteer