I am very lucky to be aware of what Rett Syndrome is and to have an older sister who has grown in to a beautiful woman even though my mum was told she may not make it passed her teens because of the condition. Unfortunately not everyone is aware of Rett Syndrome and misdiagnosis can lead to people not getting the right care and treatment. When my sister first starting regressing I know the advice and help available to my mum was limited. I want to make sure anyone affected by Retts gets the same treatment and help as my sister does now and can access all those resources that are now available, which is where Rett UK come in, so I am very proud to be able to run the London Marathon for them.

As with any disability, the impact of the condition is not only upon the child but upon family and carers too. Rett UK seeks to support the person with Rett syndrome and the family together. They are all ‘living with Rett syndrome’.


Rett syndrome was first described in 1966 by the Austrian doctor, Andreas Rett. Genetic but not hereditary, it could occur in any family at any time. People with Rett syndrome have profound and multiple physical and learning disabilities and are totally reliant on others for support throughout their lives. It is the most common genetic cause of severe disability in females. A large proportion of people with Rett syndrome have a mutation, or fault, on the MECP2 gene on the X chromosome. There are substantial communication and mobility issues for people with Rett syndrome. Most will not speak and, by adulthood, only 50% will walk. Epilepsy, chronic spinal curvature and breathing and feeding difficulties are also common features. However, we are increasingly aware of people with Rett syndrome living into their 50s and beyond. 


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