Girls with Rett Syndrome have used their eyes for years to give us a window into what they were thinking … with current eye-gaze technology they can use their eyes to speak and communicate more definitively. Susan Norwell MA, ATCAP, Rett Educational Specialist, Co-Founder Rett University
Professor Andreas Rett, a doctor in Vienna, first observed the signs of Rett syndrome in two of his patients in 1954. We now know that the developmental disorder, found mainly in girls, is caused by a genetic mutation on the MECP2 gene, a protein found in every cell of the body.
MECP2 mutations result in difficulties with speech, sensory sensations, breathing, movement, cardiac function, chewing, swallowing and digestion, but by far the greatest difficulty is dyspraxia – the struggle in programming the body to perform motor movements, making it hard for affected girls to do what they want to do.
Dyspraxia, combined with the inability to speak, makes it virtually impossible to assess the intelligence of girls with Rett. Traditional testing methods rely on hand use, to exchange cards or to point, or on speech to check understanding.
Luckily, advances in technology are now allowing us a glimpse inside a Rett girl’s mind, in particular with the development of eye-gaze equipment like those described in the story. Sadly, these machines are very expensive and can be difficult to master, especially considering the dyspraxia most girls struggle with.
However, we remain hopeful that one day our girls will tell us everything they’ve never said, but until then, I hope this book will help people understand.
The voice of Ava is my representation of the person I imagine she is. From our own family’s experience, we’ve found that Rett girls share equal parts warmth, humour and frustration, but without speech or useful communication, they are often trapped inside their bodies. One look into their eyes, however, reveals they have so much more to say. Rett girls can’t talk, but they definitely understand.
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