My name is taylor, i am 7 years old and have retts syndrome. When i was a baby i was very ill and spent alot of time in hospital, i was being sick and not holding food down so was very small, my breathing was bad and i was not meeting my milestones. My mum and nana kept taking me to the doctors and to the hopsital as they was very worried. They stayed with me and sat up all night with me for months at a time in hopsital. The doctors said there was nothing wrong that my mum was o.t.t and that she was making it up and that she should enjoy me, instead of wasting there time. In 2008 i was very poorly and went back into hopsital on boxing day, i had a high temperature and was not eating at all and being sick all the time. My mum stuck with me and pushed for the doctors to see what she was seing, to the point she wouldnt go home till they would help us. I was so sad and unhappy and getting so angry because no one could understand me or understand why or what i was going through. I was losing things i could do and now no matter how much i tried i just couldnt do them. I was screaming out to everyone whats happening to me, help me. In january 2009 i saw a lady from gosh she was with me for five minutes then sent me back to the ward. They told my mum she is 99% sure i had rett syndrome. It broke my mum and that day was hard because my nana and grumpy gramps (by the way he aint grumpy just my name for him, he is the most loving man to me) was in kenya on holiday, but not for long because within 24 hours they was with me and mum supporting us. well in 2009 on the 28th of april at 9pm we got a phone call from gosh and it was comfirmed i had rett syndrome. By this time i was doing really well and i think mum had made her mind up that i didnt have retts so i think it had hit her hard again. But she just snapped out of it and concerntrated on me and her home and work. In december on my birthday at the time i was born i had my first seizure and then to follow i had lots more. I have come along way since then my mum, step dad and nan and grumpy gramps have put so much time into me that i can now eat food and have put loads of weight on. I can use my hands a little (hold my bottle and play with toys if i like them) And i am very happy now and i let everyone know this (i shout and babble and giggle loads) I can't talk or sign so can get very upset or angry if no one understands me and may lash out or bite if i feel you should know what i want or get frustrated. I need 24 hour care by an adult and all my daily care and needs have to be done for me. I can't be left on my own as i may seizure and stop breathing, choke or hurt myself. I also forget how to breath and hyperventilate alot. There is a machine out now that can really help me commuicate, the tobii eye gaze which will help me communicate and talk for me, so people can understand me and what I want and say mummy i love you. To make this possible we need to raise funds so please feel free to donate 

thank you