Living With Rett Syndrome


Life with Rett syndrome presents many challenges.  It also presents so many opportunities for joy!  We want to help you in your journey of living with Rett syndrome.  The information given on the following topics is not intended as a substitute for instruction from your child's doctor.  It is important to remember that every child is different and your child may never experience some of the situations presented here. 



Typical Symptoms


Explore medical issues that your child may experience over the course of their lifetime and view links to information from medical professionals.



Care Guides


Expert advice and resources for daily care of your child.





Learn about Augmentative and Alternative communication (AAC) which includes any methods used to communicate in place of speech.



Adaptive Equipment & Devices


Adaptive equipment includes anything used to assist with activities of daily living.  Learn about choosing equipment and find funding support.


School & Day Programs

Read advice from parents who have been there- from IEPs to educating your child's teachers and peers about Rett syndrome.





Information and videos to help you through those turbulent teen years.



Planning for the Future


Explore topics you may not have considered but that need careful consideration as your child moves into adulthood.


Adults with Rett syndrome

A page dedicated to issues of caring for adult children.