well here we go the story of my beautifull daughter jozie ,jozie was born 17th of august 1993 she wieghed 6ib 13oz she looked so perfect but no one ever knew what was to come a few years down the line,she developed into a very smiley baby but had a few problems to come in her way wen she was ten months old she was diognosed with congential disloction of the hips and was admitted to city hospital at nottingham where she spent four weeks on traction where she lay upside down in a cot with weights on ropes connected to her legs then had surgery done then six weeks in a frog plaster but no matter what she kept smiling after six weeks she had further surgery done where metal plates where put in to keep her hips in place then further four weeks in plaster,she did learn to walk but took some time she was quite delayed in develempment but this didnt worry me to much as she had been threw so much ,but i didnt realise there was a lot worse to come ,jozie started nursery wen she was 3 and the in to school at 4 and they was some concerns over jozie as the teachers thought jozie was becoming quite clumsy but wen it came about jozie was losing her vision which came as a big shock but doctors couldnt understand why, but jozie been jozie didnt let it get in her way she still enjoyed life to the fullest but then a year down the line jozie started having siezures which no one could understand she went to nearly all the best hospitals like great ormond street in london but no one could find a reason for her problems ,from there onwards jozies mood would change she would think people where looking at her and having very bad night terrors which lend her to been in hospital serdated for her safety as the months and years went by these moods and terrors grew worse she was blind and had eperlepsy and all other problems which made life really hard as i was a single mother of three at the time by the time she was 10 her motor skills was going which meant jozie been in a wheelchair and cause no one knew wat was wrong with my daughter the social services actually thought i was the one making my daughter ill wen i moved bk to my home town of sheffield in yorkshire in 2004 jozie was placed on a at risk register as i was been blamed for my daughters illness and i had to try and do anything possible to prove this wasnt the case so in december 2007 a doctor at the childrens hospital aggreed to see jozie and admitted her for some tests she had some bloods taken and a mussle biopsy and i was prepared for the news i was going to get a few weeks later sat in a room when the doctor tells me im so sorry miss pulford but your daughter as something called juvenile battens decease and she will die as there is no cure my life just fell apart right in front of me ,i didnt know what to think or what to say but had to pull myself together for jozies sake as she had only me as her sole carer i didnt even get a sorry of the social services who had already let me down big time in my own life .even though jozie was ill a by this time very disabled she would laugh and enjoy her life she loved the joy of food and so loved school and just enjoyed having people round her ,2008 jozie had to have a peg fitted which is a feeding tube in the stomach as she was no longer able to drink fluids or take medication by mouth which was a hard thing to get my head round but we just got on with if jozie can deal with all this who am i to complain,then 2010 jozie found it hard coping with eating slowly going from normal foods to pureed food to milk feeds by a pump things just seemed to get worse , my beautifull daughter lost her fight the morning of saturday the 24th of september at 7.45 am which i will talk about at a later time , i want to help as many familys as i can by trying to raise money for the help towards a cure and to help with all the needs a family as with a child like jozie for health care funds for a new wheelchair or for a family holiday which i know will help them have special memorys to keep with them .hope u can understand wat i have written hear but spelling isnt my best but for anyone reading this please help raise money and awareness for this horrible decease that many many children are suffering from.