A Space 4 Jakey

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East Sussex

Due to all my medical requirements I need to have a bedroom and bathroom on the ground floor. I’m getting bigger and heavier to carry upstairs and Daddy isn't getting any younger (whoops, don't tell him I said that!) – seriously though, once I have my operation which should be in Sept/October 2017 I won't be allowed to be lifted or carried I will have to be hoisted all the time (I don't really like hoists). I will be going into a rehabilitation home/Hospice post operatively because I can't go home (I’m sad).  Thank you for reading my story and if you can help in anyway to help get me home I would be forever grateful. Thank you to Sullivan's Heroes for accepting us.

My name is Jakey and I’m 6 years old. When I was a tiny baby I had a very serious accident and the hospital could not fix me, my Mummy wasn’t able to look after me so I now live with my forever Mummy and Daddy who love me very much even when I’m cheeky (lots) but I’m not naughty. I have lots of brothers and sisters nieces and nephews, I love it when they come and visit and I get to look after the babies we have lots of hugs and cuddles.

l love meeting new people (especially all the pretty ladies/nurses who I win over with my great big smile). I’m told I have a wicked sense of humour and I laugh a lot, sometimes it hurts my tummy but it’s a good hurt.  

I am lucky to have this amazing computer which is called an Eye Gaze which I use by eye tracking (with my good eye). I love playing games, learning and best of all painting pictures on it. Mummy has had some of my paintings made into canvases, calendars and cards, which I sell to raise funds.  

I have holes in my brain, and because of this I now have Cerebral Palsy to the highest level to all of my limbs (quadriplegic). My wheelchair is my legs as I am unable to move or sit up independently and my head can be a bit floppy, I also have quadreplegic Dystonia which means my limbs are very stiff and hurt lots.

I suffer with Seizures, have no sight in my right eye and impaired sight in my left. I am unable to swallow so I’m fed by a tube into my tummy, my breathing wasn’t great and I was given a Tracheostomy  2 1/2 years ago (wow, that is a great little tube). I also have severe scoliosis and very very soon Mummy and Daddy will be taking me to the hospital to have magic rods inserted into my back (I must admit I’m  a bit scared) but afterwards I should be straighter and not having so much pain. My hips are also dislocated so I will have to have them fixed soon too. 

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