Rett Syndrome is a rare neurological condition that affects almost exclusively girls, caused by a mutation in the MECP2 gene on the X chromosome. It typically emerges between 12 and 24 months of age, often after a period of apparently normal development, before regression begins taking back skills the child had already gained: purposeful hand use, spoken language, coordinated movement. Many girls develop a signature involuntary hand movement; a constant wringing or handwashing motion they cannot stop or control. Seizures, breathing irregularities, scoliosis, and sleep disturbances are common. Most girls live into adulthood, though the condition carries a heightened risk of early death, a reality families live with quietly, every day.

Apraxia is Rett's most profound challenge, the brain struggles to send the right signals to the body, leaving girls trapped between intention and action. But Rett doesn't take their minds. Girls retain full emotional awareness and comprehension. The cruelty isn't cognitive loss. It's the gap between a fully present person and a body that won't cooperate.

There is currently no cure. Research is actively working to close that gap.

The Rett Syndrome Association of Australia supports girls and their families, funds clinical trials targeting Rett and its various manifestations, and builds awareness across the country. The Rett community works tirelessly to develop strategies that improve quality of life — and find a cure.

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