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Joubert Syndrome UK

 



 

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Flying Funds

Flying Funds

http://www.jsuk.org/components/com_agora/img/members/3/mini_bank.jpg I've been on a boat, train and car, so next on the list is a plane!
Some of my DVD's show what it is like to fly on aeroplanes, when mum asked me if I would like to fly on a plane one day, I looked at her, stroked her face and gave her one of my 'yes' smiles. She said that we would need a lot of pennies so we best start by getting a bank account! At the end of summer I opened my own bank account, this is a photo of me in the bank putting some of my savings in. Mum said we could fly to the JSRD's Foundation conference in Florida in July, I will get to meet some new friends and I can visit Disneyland as we will be so near.
Some of mum and dad's friends are helping me to save up by doing some fundraising. Steve is going to ride his bicycle around 3 lake's in one day so I hope I can go down to cheer him on in the holidays. It better not snow! My special friend Karen who sometimes takes me out and about is also putting on a dance performance with her group of friends next year to help. I'm looking forward to that and I hope she will let me take part, but mum said I will have to wait and see  smile 
The last few week's have been great fun, I went on a train to see Santa, he came to school and I saw him at a pantomime I went to at the weekend. He gets everywhere this Santa and he is the funniest looking guy I have ever seen, I laugh so much when I see him but I just dont know why he want's to give me parcel's, there boring! School has been good fun too, we went to a pantomime and we put on a show called 'The Landlords Cat'. I sure had mum fooled, she thought I was going to be a shepherd when school asked her to send in a teatowel as part of my costume, haha! My role was to be one of the townsfolk and my job was to tickle the audience with my tickling stick. We got a lot of cheers and claps at the end and I think everyone realy enjoyed our show, I loved taking part as there was lot's of singing and dancing for all my friends to join in with.
                             http://www.jsuk.org/components/com_agora/img/members/3/mini_jake-townsfolk.jpghttp://www.jsuk.org/components/com_agora/img/members/3/mini_IMAG0456.jpg
I've just come back from a weekend away with my friends and I now have some time to relax with my brothers at home because we have 2 weeks off school. Dad will be at home when he finishes work soon and we might go to visit my grandma and grandad near the seaside if it doesn't snow! Mum said we also have to go food shopping, yipee, I love food shopping as I can swipe my arm and touch all the chocolate flavoured food now and let mum know what I want. She said there is a lot of chocolate in the shops at the moment because it's christmas. I dont like christmas very much, I dont understand what all the fuss is about and it annoys me, so mum doesn't bother me with it. My brother's are good too as they don't fuss me with it at all. I have the best brother's in the world as they help me, play with me and understand and respect me when I dont do the things they like to do.
Anyway I got my wheel's fixed and my chair had a few alterations so I'm good to go again. If it snow's though mum said we will have to try and find some ski's to fix to my wheel's otherwise we are not going to get out and about much, mum is going to do some research and see what she can find. How cool would that be if I could get my mum,dad and brothers to ski me through the snow!
Mum said to say HAPPY HOLIDAYS to everyone and I will talk to everyone again in the New Year  big_smile

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