What are the effects of Rett Syndrome?
Our girls often lose the ability to speak, walk, or use their hands with purpose. Scoliosis, or the curving of the spine, and seizures are also common.
By far, though, Apraxia is Rett's most fundamental and severe aspect. It means that even though the girl wants to move a certain way or do a specific task, her brain has trouble sending the right messages to her body. So, she cannot control her body to do what she desperately wants.
Despite these challenges, every movement and every attempt to interact is a testament to their resilience. The Rett Syndrome community is a testament to hope. Families, therapists, and researchers collaborate to understand and manage the condition and its affects. Each day brings new learning and adaptive strategies that can improve the quality of life for those with Rett Syndrome.
In this photo, Kenzie is sitting in front of her Tobii eye gaze computer, which helps her communicate. She wears hand covers to protect her hands from involuntary biting, and hand wringing. Kenzie has fractured her own hand from the pressure she puts on them 😔
