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

Saturday 3 April 2010

Review of week two

Hi everybody, sorry that i have not put anything on for a week but we have all been so tired as we get up every day at six o clock sometimes a bit earlier and by the time i have finished my physio speach and language therapy and oxygen therapy it is nearlly seven o clock at night when we get back to the hotel so its then bath and straight to bed for me and mummy thenhas to get things ready for the next day and try and eat dinner.I am still doing really well with therapy and really like therapy but have been a but more grumpy this week when Ashley makes me work hard. Ashley says that maybe my muscles are starting to hurt but mummy thinks that some of it is because i am used to getiing my own way and am spoit. What ever the reason i have to keep working hard to get better as i really want to be able to run round and play with my cousins some day.Or at least be able to sit up and play with my toys and maybe get around some other way. Which reminds me Ashley keep making me do arm exercises which i hate more than anything in the world , well nearlly anything in the world my worst thing ever is speach and language therapy because rose is trying to teach me to swallow and i dont know how to which is why i dribble so much. Mummy says that until i learn to swallow i wont be able to eat so that i have to keep doing these exercises with my tongue and rose keeps rubbing my jaw line and no matter how much i try and get her to stop she just wont. She is very persistant. I get loads of cuddles from Ashley and rose and they cheer and sing lots when i do good which i really like but they are not like other grown ups as they dont give up and let me have my own way which is very annoying. I just realised that i havent spoke about my oxygen therapy mummy will put some pictures on for you to see a bit later but its like a large inflated tube that i get into with mummy once3 we are inside they zip it up. Its betterthan it sounds there is a thick mattress inside that we can lie down on but its high enough for mummy to sit up in just about once inside i am meant to wear an oxygen mask, i hated it at first and got very upset as the mask reminded me of hospital but i am now getting used to it although if mummy isnt watching i  might try and sneak it off. Mummy says that it would be very relaxing and trys to make me have a sleep with her as we are in there for over an hour and its the last thing we do before home time but so far i havve refused and managed to stay awake and wriggle and kick mummy which i think is much more fun. Mummy doesnt find it funny when i fall asleep as soon as we get out though.
On friday this week when i was at the center we had two american figure skate champions come to visit us i had my picture taken with them and the press turned up and took my picture as well, thankfully mummy had done my hair in pig tails so i looked particularly cute. They kept telling me i was adorable and making funny noises at me . I smiled for the pictres but refused to open my eyes as soon as they finished i opened my eyes and did a bigger smie i am so funny sometimes. They where really nice and gave us tickets to go and watch them that night in a ice skating show i will tell youn about that in a minute. Before i came home from the center i also met another man he was really tall mummy said that he had two daughters who where very strong and played tennis and that he was famous too as he managed them and helped get them so big and strong. His daughters names where venus and serena williams. He was a very nice man and had his picture taken with us, he didnt  have his picture taken with any other families i think its because i am special. I have a picvture i will put on although i dont think it was a very good one as the flash wasnt on so the pictures of me withhim and the ice skaters havent come out very well but leo at the center took some on his camera so i will try and get copies of them.
The funniest thing happened next leo from the center asked mummy to come over and give him a hand and speak to a reporter about me and how well i had done with the treatment, it was only when she got here did she realise it was for TV she had to stand there on her own in fronmt of the camera talking about me and the center and she didnt get any help and no one asked her questions she was all alone. She was ever so embarrased but said at least she was talking bazout her favourite topic ( thats me). Mummy had no make up on and had been up since six in the morning she is just glad she doesnt know anyone near here who would watch it.
Well we went to the ice skating that night and i loved it we sat with sttafano who is a little boy who i have my treatment with and his family they are from italy so they speak italian to me i like it. Thye ice skating was in a big ice hockey stadium and it was very loud with everyone cheering and music and lots of flashing lights which i loved. I am now lokoing forward to a relaxing weekend where i acn catch up on my sleep mummy is going to give me a massgae and take me to the spa pool to try and relax my muscles so i cant wait and then hopefully it will be nice weather and i can go nd play on the beach for a bit

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