How Rett Syndrome Affects Motor Development

If your daughter learned to wave, babble or grasp — and then, heartbreakingly, those skills began to slip away — you are not imagining it, and you are not alone.

In short

Rett Syndrome affects motor development in a very distinctive way: most children develop fairly typically in their first 6 to 18 months, then enter a period where hard-won skills — like reaching, grasping and crawling — slow down and may regress. A hallmark is the loss of purposeful hand use, often replaced by repetitive hand movements such as wringing, clapping or mouthing. Walking, balance and coordination are commonly affected too, though many girls retain a great deal of connection, joy and ability with the right support. Rett Syndrome is a genetic condition (most often linked to the MECP2 gene) and is confirmed through clinical and genetic assessment — therapy then focuses on preserving function, comfort and communication.

How motor development is affected

Rett Syndrome touches movement across the whole body, and the pattern tends to unfold in stages:

• Loss of purposeful hand skills — perhaps the most recognised feature. A child who once picked up toys may gradually lose that fine-motor control, with hands becoming busy in repetitive midline movements (wringing, tapping, mouthing).
• Gross-motor changes — sitting, crawling and walking may be delayed, slow to progress, or partly lost. Some girls walk with an unsteady, wide-based gait; others may not walk independently.
• Tone and coordination — muscle tone can be unusually low early on and stiffer later; apraxia (difficulty getting the body to do what the brain intends) makes initiating any movement effortful.
• Posture and spine — scoliosis (curving of the spine) is common as children grow and needs regular monitoring.
• Periods of change — there is often a regression phase, then a more stable plateau where skills can be gently maintained and even rebuilt in small ways.

Importantly, intent and understanding often far outstrip what the body can show. Many girls communicate richly through eye gaze and expression even when hands and speech are affected — which is why supporting movement and communication together matters so much.

When to seek help promptly

Because Rett Syndrome involves regression — the loss of previously gained skills — any time a child stops doing things she could do before (losing hand use, babble, social engagement, or steadiness on her feet) is a reason to seek a prompt paediatric and developmental review. Early genetic and clinical assessment brings clarity, and early therapy helps protect movement, prevent complications like contractures and scoliosis, and keep communication open.

The Pinnacle way

Developmental measurement supports care planning; diagnosis requires an appropriately qualified healthcare professional., under qualified clinician care — never from an online form or an app. For a child with Rett Syndrome our therapists work as one team to preserve hand function, support posture and walking, manage tone, and build powerful eye-gaze and assistive communication so your daughter stays connected. Learn more about Rett Syndrome, explore how occupational and physiotherapy support movement and daily skills, and understand your child's starting point with the AbilityScore.

Trusted sources

WHO ICD-11 classification of developmental conditions (icd.who.int); American Academy of Pediatrics developmental and regression guidance (healthychildren.org); CDC developmental-milestone resources (cdc.gov) on recognising loss of skills.

Next step — If your daughter has lost skills she once had, especially hand use or steadiness, book a developmental assessment with a Pinnacle clinician for clarity and a gentle, practical plan.

This is general information, not a diagnosis — individual assessment and diagnosis require an appropriately qualified healthcare professional.