Rett syndrome is caused by a non-inherited genetic mutation of a gene on the X chromosome, which affects the development of the brain. The syndrome usually gets detected when a child is between 6 and 18 months old, because of delayed development connected to balance and body posture.

When the child becomes older more symptoms emerge; loss of acquired spoken language, epilepsy, loss of hand skills and scoliosis. To what extent these symptoms appear can vary a lot, but common for everyone is that it affects nearly every aspect of the child’s life.

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Every person with Rett syndrome has its own personality – just like everybody else. Among some of the common characteristics that usually are mentioned are kindness and anxiety when it comes to changes.

Rett syndrome occurs almost exclusively in girls, very few boys are affected with the syndrome. The syndrome got its name after the paediatrician Andreas Rett from Vienna, who first described the condition in 1966. The syndrome got internationally known in 1983.

Stories

Here we share some interviews, stories and other interesting stuff for families with special experiences.

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