What Is Rett Syndrome?

Estimated to affect 1 in 10,000 people, Rett Syndrome is most often seen in girls and women because the gene which causes Rett Syndrome is on the X chromosome. Girls and women have two X chromosomes whereas boys have one. The consequence of not having that ‘back up’ copy of the gene is devastating. Most boys with Rett Syndrome do not survive beyond the age of one or two years old.

 

Most children and adults with Rett Syndrome are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are common.

Research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.