About the charity

Rett syndrome is a rare neurological disorder affecting mainly females and very few males. People with Rett syndrome have profound and multiple physical and learning disabilities and are totally reliant on others for support throughout their lives.

Imagine a healthy baby girl start to become a little person; smiling at 6 weeks, picking things up when she’s 7 months old and at 10 months, she’s crawling her way into everything. Imagine her 1st birthday; she sits up without help and smiles at the camera - even saying her own version of “cheese.”

Now imagine that same baby at age 2. She can no longer sit unaided, stops using her hands to do things and starts wringing them all the time. She starts having seizures and by the time she’s 3, she is grinding her teeth and stops talking. At 6, her spine starts to curve, limiting how well she can move. She screams and laughs during the night for no reason and doesn’t respond to or interact with others. By her 8th birthday, she can’t move on her own, can’t talk and pulls away from social contact with others. This is the reality for parents with children who have Rett syndrome. RSAUK is a national charity seeking to make a difference for people living with Rett syndrome by:

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  Funding research
  
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  Supporting families through telephone support, clinics and our network of support advisers
  
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  Providing latest information and best practice
  
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  Promoting awareness