venitia Treatment in America

I’m a 32 year old single mum my child is my life I am living with chiari malformation which means I was born with part of my brain in my neck plugging my spinal cord the brain tissues defends down blocking the csf flow and causing horrific symptoms my skull never grew with my brain I Also have syringomyelia where you have fluid filled cavities in the spinal cord and the csf flow collects in thos cavities and casing a awful lot of damage n excruciating pain I live in chronic pain daily and can never get a break from it I had brain n spinal surgery in 2013 it was called a fornum magnum decompression c1 c2 arch removal dura plasty they removed the bone from the back of my head to give my brain room this surgery went drastically wrong and I ended up wheelchair bound fully dependant on carers to wash my dress me do house work food shopping I feel trapped in my own body I am paralysed in the left leg and the leg is also fused and the hip has now collapsed my pelvis has collapsed this also causesing me horrific pain in my pelvis wen I try to sleep and my spine every night without fail goes into full spastisity I scream in pain wen I wake I only sleep about 2 hours a night cuz of this pain it also makes my chest tight n I can’t breath before I had my surgery I was a very active young lady n would never sit down I did everything with my daughter and now I can’t which is heartbreaking isolating n makes u feel very trapped how ever I still need a shunt put in my head I have cranial instability 5 missing disks in my neck I can’t hold my own head up without a neck collar I have 2 new syrinxes in my spinal cord scoliosis a collapsed pelvis my retroflexed odontinoid peg is pressing right in my brain stem my life has been destroyed since having surgery and it is very hard to live this day in n day out it’s one very big battle how ever the Uk are not willing to help do operate as they have messed up 3 times and I am getting very desperate America is my only hope to survive living like this in pain 24/7 not able to do what a mother should do with there child my lil girl is my only heartbeat left in me without her I couldn’t fight this fight America is willing to help with these life changing n life saving surgeries for me I’m scared I will not live to see my daughter even get to 18 they have me only 2 months to live wen they found it if I didn’t have surgery my daughter was 6 n is now 11 yes I had surgery but it turns my life upside down my all my daughter wants is her mummy to be a Lil bit better n not have to live in so much pain n contours pain I can not eat as the retroflexed odontinoid peg is pressing my brain stem so much I choke an awful lot wen I choke no one can help me cuz of how fragile I am I also have Eds which is a connective tissue disorder n pots I really really need help from everyone to get me to America every penny counts to help change my life with these operations n be the mummy I use to be n not be trapped in my own body can’t get out of a bed by myself can’t get out of my wheelchair by myself it’s very hard to live I haven’t eaten for 3 years I have to live on supplement drinks I’m Catheterised n have a paralysed bowle to I have a law hand on my left hand n not very great strength I get swishing noises in my head like my brain is drowning I hear my own heart beat I’m very noise n smell sensitive since having surgery I have optical neuralgia to n I’m starting to get a lot of vision loss comes n goes this is now my only hope to get to America n receive treatment from doctors that actually specialise in all these conditions or I’m scared for my life I may not see my child grow up I’ve jus defeated so much in the passed five years since having surgery the list go go on forever I’m always in hospital but ppl ate afraid to touch me and make me feel like I’m a burden to ppl before I was diagnosed they told me I was making it up and it was all in my head how can fitting collapsing screaming in pain be made up not being able to walk in the strait line nothing wen they found out what I had they were very worried but now scared to treat me my life has been hell n I jus want it to stop I need some raleave from all this it’s jot fair on my daughter or me or any other ppl that have to watch me go through this