Understanding Rett syndrome
Rett syndrome is a severe condition of the nervous system that affects physical movement and motor skills. It may cause speech problems (such as inability to learn to speak, or loss of speech), difficulty walking or loss of the ability to walk, and loss of purposeful hand use.
Rett syndrome is caused by a change in the MECP2 gene that is thought to disrupt the normal function of neurons and other cells in the brain. In most cases, there is no family history of the condition and the genetic change arises randomly in one individual.
Facts about Rett syndrome
- Rett syndrome is found almost exclusively in females
- It has a prevalence of approximately one in 10,000 to one in 15,000 females between the ages of five and 18 years
- There are about 200 girls in Australia who have been diagnosed with this condition
- Babies develop normally until six to 18 months; then they stop acquiring new skills and lose existing ones.
Symptoms of Rett Syndrome
- a period of regression during the first five years of life, followed by recovery or stabilisation
- partial or complete loss of purposeful hand skills (such as grasping, holding or self-feeding)
- partial or complete loss of language skills (speech)
- walking (gait) abnormalities, such as an unsteady walk or an inability to walk
- repetitive hand movements such as hand wringing or hand squeezing, clapping or tapping, mouthing and hand washing or hand rubbing movements.
How can CPL help?
Just diagnosed and kids with Rett syndrome
Rett syndrome is usually recognized in children between 6 to 18 months. Our early intervention services can help support you and your family learn how to best support your child and develop strategies for reaching their goals.
The NDIS Early Childhood Early Intervention (ECEI) approach supports children aged 0-6 years who have a developmental delay or disability and their families/carers. CPL's Support Coordinators can help you to navigate your first NDIS plan.
Teens and Adults with Rett syndrome
Our Allied Health team offers Speech Therapy, Occupational Therapy and Physiotherapy to support a diverse range of communication and mobility needs.
Sometimes it helps to have an extra set of hands at home. CPL can support your needs, from getting ready for school, university or work, right through to mealtime assistance and medication.
CPL provides 24/7 Supported Independent Living services, and has a number of vacancies in accessible homes.