Living with Rett Syndrome: Understanding, Supporting, and Including
Rett syndrome is a rare neurological condition that primarily affects girls and is most often caused by a mutation in the MECP2 gene. Children with Rett syndrome typically develop normally in their first year, before gradually losing previously acquired skills such as speech, purposeful hand use, and coordination.
As the condition progresses, it can affect nearly every aspect of a person’s daily life—from walking and eating to breathing and communicating. Though the challenges are significant, supportive care and inclusive attitudes can help individuals with Rett syndrome live meaningful, connected lives.
Key Characteristics and Common Challenges
Early signs of Rett syndrome may be subtle—such as delayed crawling or walking—but often become more apparent as development regresses. Common characteristics include repetitive hand movements (like wringing or clapping), difficulty walking, slowed growth, and loss of verbal communication.
Over time, individuals may also experience:
Breathing irregularities,
Seizures,
Scoliosis,
Sleep difficulties, and
Gastrointestinal issues.
Because each person’s presentation is different, their needs vary. Some retain partial mobility or use eye gaze to communicate, while others rely more heavily on physical and emotional support in everyday life.
Supporting Daily Life with Dignity
Support for individuals with Rett syndrome involves a combination of healthcare, therapy, and personal care. Families often work with physiotherapists, occupational therapists, dietitians, and support workers to create care plans that evolve with changing needs.
Support workers may help with:
Assisting mobility and safe transfers,
Preparing texture-modified meals or managing feeding tubes,
Using alternative communication tools (like eye-tracking devices),
Creating predictable routines, and
Offering social connection and emotional reassurance.
Importantly, non-verbal communication should never be overlooked. Observing subtle cues—such as eye movement, facial expression, or changes in behaviour—can give valuable insight into a person’s preferences, emotions, or pain.
Inclusion, Creativity, and Connection
Despite communication and mobility challenges, people with Rett syndrome can and do build strong relationships, enjoy hobbies, and contribute to their communities. When support focuses on ability rather than limitation, there’s room for creativity, joy, and personal growth.
Encouraging participation in music, art, movement, or sensory-friendly outings not only enhances wellbeing but also fosters a sense of identity. These activities can be tailored to accommodate the individual’s physical and cognitive needs while still offering meaningful engagement.
Final Thoughts
Rett syndrome presents complex challenges, but it does not define the whole person. Through patient, flexible, and respectful support, individuals with Rett syndrome can thrive in their own way. By focusing on communication, inclusion, and individual strengths, we create more than just care—we build connection, trust, and a life of value.