my story
I was born in July 2009 and developed like any other little girl until the age of one. I loved to crawl, to explore the world around me. I was close to being able to walk and I could say a few words. Then I started to lose these skills; at first gradually, then suddenly. I became tired, weak, confused, anxious and withdrawn. I lost the ability to communicate and the use of my hands. I could no longer play with toys or feed myself. I began to suffer terrible headaches and muscular pain. I was diagnosed with Rett Syndrome shortly after my second birthday.
I have a regular physiotherapy, occupational therapy, speech & language therapy, hydrotherapy and osteopathy. I need to do all these things to stop further regression and to limit the chances of developing more complications. Even with these therapies, I have developed severe scoliosis and will soon need to have my spine fused.
It doesn’t have to be this way. Please help scientists to develop a cure.
