According to the National Institute of Neurological Disorders and Stroke, Rett syndrome is a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.
At May Institute, we have had the opportunity to partner with some very special families whose children—including little Riley—had a Rett syndrome diagnosis. Until 2013, Rett was considered an autism spectrum disorder (ASD).
Meet the remarkable Riley here, in two stories published by Exceptional Parent
A Full Plate - Helping a Child with Rett Syndrome Thrive and Grow
Team Riley - Joining Forces to Help a Child with Rett Syndrome Find her Voice
Riley is also one of the "Faces. Voices. Lives." profiles of May Institute.