Rett Syndrome: How Girls Affected by This Disease Speak with Their Eyes

They speak thanks to a PC and a simple software. They speak with their eyes. Based on extraordinary technology and work, developed by an association dedicated exclusively to their, serious pathology. These are girls affected at a very young age, between 6 and 18 months, by Rett syndrome, a genetic disease that, with a few rare exceptions, does not affect males.

Rett syndrome (one in 10 victims) slows neurological development It progresses through four stages, during the most delicate moments of a girl's development. In the first, very violent stage, the development of the head circumference and psychomotor skills, which until now seemed completely normal, slows. Furthermore, the girl is distracted and shows no interest in her surroundings or even in play.

The symptoms of Rett syndrome begin to become more evident with the second phase of the diseaseDevelopment regresses, some of the acquired skills evaporate, and insomnia, an irregular gait, and easy irritability set in. Girls lose the functional ability of their hands and have symptoms that closely resemble those ofautismStage three: Development stabilizes, emotional connection with the surrounding environment is restored, and poor muscle coordination is accompanied by epileptic seizures. This stage alone can last for years. Then comes the final stage, stage four: weakness, atrophy, and scoliosis prevent the girls, now grown into teenagers—around age 10—from walking. And the feet often become swollen, cold, and bluish, due to atrophy.

The AiRett Association It unites families who must deal daily with a child affected by Rett syndrome. This has led to a series of projects (over 400 since the association's inception) to improve the quality of life for girls and their parents. Among these, one that has worked very well is the project "Beautiful eyed babies“Without excessive expense, but just by providing themselves with a PC and software, girls can communicate with everyone through their eyes. With just eye movement, and thanks to a computerized system, they speak and play, thus trying to normalize their relationships and the relationship with the outside world.