Rett UK

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Rett syndrome is a rare neurological disorder affecting 1 in 15,000 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. Rett syndrome is the most common genetic cause of severe disability in females. It is a challenging disorder for most of the families who are touched by it.

Imagine a healthy baby girl start to become a little person:

• She smiles at six weeks old,
• picks things up with her thumb and first finger when she’s seven months old
• and at 10 months, she’s rolling and crawling her way into everything.
• by her first birthday she can say her own version of “cheese.”

Now imagine that same baby at age two:

• She can no longer sit unaided,
• stops using her hands to do things and starts wringing them all the time.
• She may start having seizures by the time she’s three, she is grinding her teeth and stops talking.
• At six, her spine may start 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 eighth 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 of children with Rett syndrome.

Rett Syndrome Association UK is a national charity seeking to make a difference for people living with Rett syndrome by:

• Funding Research

• Supporting families through telephone support, clinics and our network of support advisers

• Providing latest information and best practice in treatment and care

• Promoting awareness to medical professionals and general public

Please help us make a difference!

Please help us find a cure!