My name is taylor, i am 5 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 ott and that she was making it up and that she should enjoy me instead instead of wasting there time. In 2008 i was very poorly and went back into hopsital on boxing day, i had a high temp and was not eating at all and being sick all the time. My mum stuck with me and push for the doctors to see what she was talking about, to the point she wouldnt go home till they would help us. I was so sad and unhappy and getting so angry coz 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. Well jan 2009 i saw a lady from gosh she saw me for 5 mins then sent me back to the ward. They told my mum she is 99% sure i had retts syndrome. It broke my mum and that day was hard coz 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 coz 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 retts 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 you through herself into 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 loads. I have come along way since then my mum,lee and nana n gramps have put so much time into me that i can now eat food and have put loads of weight on. I can crawl alittle, use my hands alittle (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. I need 24 hour care by an adult and all my daily care and needs have to be done for me. I cant 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. But we have just had a big breakthrough where retts reverse have found that they can reverse the symtoms of retts (amazing) by using bone marrow, and now there is hope for us girls to get our voices to work so people can understand us and what we want and say mummy i love you. Be able to walk, play like other children. Be able to live a life like every other child, how much that would that mean to me? EVERYTHING. But to make this possible we need fund rasising and money donated to reverse retts syndrome reseach trust uk.So me and my family and all the other girls and familys are begging yous to help us get it there and get the help us get what you all have. PLEASE I WOULD DO IT FOR YOU. This is no lost cause we have found a cure, it seems to work, we just need to get out there.

KELLY LAWS MADDIES MUM WILL UPDATE THIS WITH MADDIES STORY SOON :) My daughter Maddie was born on 10th March 2008. I felt so lucky to have a beautiful and perfect baby girl. Maddie passed her 12 month health check and the future looked bright. By 17 months it was obvious she had changed. She lost her speech, strength and eye contact. Finally on 15th March 2010 Maddie was diagnosed with Rett Syndrome. RSRT UK has changed our lives and we need your help to put the amazing research and findings into fixing our girs. Thankyou for reading this and thankyou in anticipation for any donation you decide to make. xx