I am the mother of a beautiful daughter named Claire who was tentatively diagnosed with atypical Rett Syndrome for 25 years and with classic Rett Syndrome for two years. In April 2020, at the age of 30, Claire was finally correctly diagnosed as having Phelan-McDermid Syndrome. I spent five years organizing and maintaining an Indiana Rett Syndrome family support group, served for three years as a Regional Representative for the International Rett Syndrome Association (now the rettsyndrome.org), and have maintained this site since 1995. Now that Claire has been correctly diagnosed, I have shut down this page.
If you have further questions about Rett Syndrome or are looking for other parents to network with, please visit the rettsyndrome.org.
Debbie Schilling, Indiana, USA
Dedicated to the memory of my mother, Irene Normark Schilling, the first volunteer for people with disabilities I ever knew. I miss you, Mom.
Copyright © Deborah Schilling/Thomas Bundy