Emma is a delightful 8 year old little girl who was diagnosed with Rett Syndrome just over 6 years ago.  She developed normally until about 15 months when she stopped reaching her milestones. She then lost skills she once had.  As a parent, watching your child regress and lose skills is a devastating experience, especially at at time when she should be exploring her environment and learning independence.  The devastation of Rett Syndrome makes her completely dependent for EVERYTHING she does. Yet despite her challenges and the monster we call Rett Syndrome, she exemplifies more courage and determination than anyone we know.  

One of Emma’s biggest accomplishments has been walking.  Emma started walking in 2006, just before the birth of her little sister, Abigail Lucy.  This has been tremendous for Emma and has allowed her a small bit of independence in an otherwise dependent world. 

Communication continues to be one of the toughest parts of Rett Syndrome.  Girls cannot speak and cannot effectively use their hands and thus cannot use sign language, point or gesture.  Right now Emma communicates primarily by answering yes/no questions with her eyes.  But even this requires hard work for Emma as she attempts to control a body that doesn’t want to listen.  We are also working with computer-like devices called Augmentative Communication to try to allow Emma to communicate her wants, needs and thoughts to us.  For the first time ever she is able to express her own thoughts rather than depend on choices we give her.  We see now more than ever that there is a smart, interested and delightful little girl trapped in a brain and body that does not work for her.  They are functions we take for granted and challenges she faces every day. 

We need your help.  The scientists are ready but we need funding; we need your help to do the research necessary to fight this monster of Rett Syndrome.  Please help us let Emma be all that she can be--help us realize our dreams of one day hearing Emma say “I love you” or watching her run with her friends or give her sister a hug. 

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