At the age of one you was under better control and gaining weight so good we had to change you to a different feed. One of our biggest problems was getting the right type of seating for you. what a challege wheelchair services had. But they always came up trumps. the thing was when they thought theys sorted you out you'd go and throw another new problem there way usually you head little miss. Even then anybody who met you immediatly fell in love with you and your strong character. How could you not be loved by now i was your voice and I knew everyone of your whims and ways. it was up to me to fight your case and get you all the things you needed in life.And fight was something I got pretty good at. You needed the best and i went out of my way to make sure you got it. All this time i never realised that you was teaching me this to be strong in life. Preparing me for the inevitable that was to happen. Dont know how but even now there was something in the back of my head staying you wouldnt make it past your 7th birthday. At 3 it was decided that to try and help your chest infection the best way forward was to have a gastrostomy tube fitted. I knew this is what you need but deep down was dreading it. I was a single mom at this time your dad really never could handle your disability baby girl . but me i saw you no different and carried on. someone had to when all the other around us couldnt. You had you op in october 2002 but it went wring and your body rejected the gtube. They called me in saying to say my goodbyes i said you was going nowhere. You was very ill but you wasnt ready to go and after a few bad weeks pulled through. The op had to be done again this time in september 2003 this time the dr made sure it would stay in place. You contracted adonis virus and they had to put you in icu again they said say goodbye. i told them again you wasnt going anywhere and you wasnt. we got you aver this and you came on in leap and bounds turning into my little imy. You started making vocal noises so amazing and i got to know what each sound meant. Like mom in bored mom where are you play with me. You loved your music and lights. You bedroom looked like a mini disco. What must the neighbours think. we didnt care you loved it and that was all that mattered.