About Me

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My name is Isabella grace i am Six years old and i have a rare chromosone disorder, it doesnt have a name so not much is known about it.I have two holes in my heart , epilepsy which i struggle with especially in the winter. I am also registered blind and am unable to feed so i am fed by a machine. Despite all this i am a very happy little girl and have started smiling and giggling although people are still trying to figure out what makes me laugh. I am very delayed but i can hold my head now and roll onto my side in the last couple of weeks i have started sitting for over an hour on my own which is amazing although mummy still finds it hard as i normally have to be carried every were and i am getting very heavy but i like being carried as its extra cuddles.xx My family are amazing are are all working hard at the minute to raise £30,000 so that i can go to America for intensive and specialist physiotherapy and speech and language therapy. The hope is that one day i will take my first step or eat my first chocolate button. DONATIONS CAN BE MADE USING THE PAYPAL BUTTON OR BY SENDING IT TO DC 3017 CHRISTINE BENNETT CAIT BRENTWOOD POLICE STATION or e mail us for further info

Tuesday 14 June 2011

one year on

Well its now been over a year since we returned from America and what a year it has been. I have moved to bicknacre with mummy and tony and we are in the middle of trying to sort out building work so that the house can be adapted for me but as with everything else with the council it all takes time and a long time at that. Daddy and amanda have had a baby so i have a little sisiter called darcy who gives me lots of kisses and cuddles.

 I did really well in America and mummy has been very busy this year trying to find therapy in this country that i can continue to do so that i continue to improve. I have a lovely lady called Adyta who i see she is very nice but she works me very very hard. i see her every friday and once a month i have a week of intensive therapy, my family have to pay for this privately and it costs nearlly one thousand pounds every month. Mummy has said that they are soon going to start more fundraising so that i dont have to stop my treatment as i am doing so well. I play with my toys on my own now and can move things in between my hands, i have started rolling onto my stomach although i cant always get off my stomach and need some help. i am getting stringer all the time and my balance is getting better. I still cant sit on my own but i am much closer and opnly need a bit of help now as i am still a bit wobbly but can correct myself a lot more if i starte going to one side. I have also started to put some weight through my legs but they are not strong enough to take all my weight yet. Before i went to America i had a standing frame but could only manage a couple of minutes before i got too distressed were as now i go in for one hour every day and really enjoy it. I have even been known to complain if i get taken out to early.
well i hope everyone is great and hope to see you all soon at a fundraising event. details of future events will be posted soon along with dates, times and prices