Living with Rett Syndrome

Symptom Management & Rett Clinics

Rett syndrome is a unique disorder that most often begins to show itself in early childhood. It is primarily discussed as a neurological disorder, or a developmental disorder, associated with loss of acquired skills like speech and hand function. Health and medical issues may not always be the first issues that come to mind. However, there are some medical issues that children with RTT may experience over the course of their lifetime. For parents and caregivers, these can quickly become the most overwhelming and fearful aspects of the syndrome if we don't know what to look for, how to rule-it-in or how to rule-it-out, and how to treat and manage.

School and Day Programs

The goal in selecting the right educational or day program setting for your child should be to provide her with the most stimulating program in the least restrictive environment, taking into account each child's own special needs and personality.


Adaptive Equipment & Devices

Choosing Equipment

The initial evaluation is very important in determining what kind of equipment to choose. It should be done by your child’s local physician, physical or occupational therapist, or a local medical center, who may consult with vendors (equipment supply stores) to find the right piece of equipment for your daughter.

Contributing to Research

View a full list of clinical trials and databases available to you and your family.

Planning for the Future & Placement

Guardianship is a legally recognized relationship between a competent adult and an adult with a disability (ward) who is incapable as determined by a court of law managing her affairs. In this relationship, the guardian has the duty and right to act on her behalf to make decisions which affect her life and to promote and protect her well-being.