Children with Sotos syndrome show a very rapid growth in length, head, foot and hand size from birth. The rapid growth declines gradually, but the children are still far ahead of others in the same age.

The cause of Sotos syndrome has recently been discovered (2002). It was found in the absence of a part of a gene on chromosome 5.

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As for everyone, the individual differences vary a lot between every single person who has Sotos syndrome. However, there are some common characteristics for many persons with the syndrome; such as developmental delay in terms of motor skills, language development and learning as well as challenges with coordination and balance.

The name comes from Professor Juan Sotos, Columbus, Ohio, who in 1964 described five children who all grew rapidly and had many similar characteristics.

Stories

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

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Grown up siblings share their stories

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