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venitia Treatment in America

£1,322 of £100,000 goal

Raised by 57 people in 14 months
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       
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pain isn't a good life the suffering makes your miserable makes you forget n cant focus on day to day life if it isn't one thing its another it never stops due to have my leg amputated this August due to it rotten away but dont look like it will happen if they dont get me better from these Infections I have
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as if I dont have enough going on with all this chiari syringo scoliosis spondylosis osteoarthritis spinal cord thinning brain damage Ed's pots and all the rest of those comorbid conditions now I have my rotten leg that I'm so desperate now for them to take of I was so scared to have it done but really This fuking pain from this rotten leg is so much I really can’t cope I’ve never felt pain like it it keeps making me pass out I live in chronic pain daily n so so much pain this is far to much for me to handle if they don’t hurry up n take this leg I will get a circular saw n do it myself I’m at breaking point I’m making my poor carers break down in the mornings they always see me so strong and taking on the world I can not take this anymore it’s not even a joke and the only drugs I can take for this type of pain is gabapentin n pregabalin both of which I’m allergic to I really can not cope with this shit no more it's so wrong I'm passing out daily from the pain it's making me vomit I dont even want to go to bed anymore as the pain is so much worse wen I'm hoisted out of bed to chair that's wen I start passing out that's wen I start breaking down into tears I woke this morning n before I could even say good morning to my child I'm sobbing good morning to the girl her lil face looked worried n asked y I was crying I hate even have to tell her I hate that I have. to break down on her sorry I have no updated for a while to much pain to even remember things
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sorry for no updates recently had a lot going on with my health lately my pain is just constant not dying down with any medication what so ever I'm not able to think to well my memory has been very very bad thought it was bad before but now daily I'm not remembering things I've done or ask ppl when did that happen or sitting confused about it I don't no y this is going on so much I keep being found unresponsive n every time I'm found unresponsive they have been told to call a ambulance so the last time I was rushed in to hospital which was a few weeks ago for being unresponsive all I remember is waking up in the hospital n freaking the heck out and shouting what am I doing here cuz I asked this they just said it must be down to her non epileptic seizures she must be having them in her sleep I really hope not that's for sure I only remember after coming round I can be speaking to you n yes this use to happen but not daily il be talking to u n stop and cuz I'm embarrassed to ask what I was saying to most ppl i must look a twat cuz i change the subject as i cant remember what we were speaking about i suppose its save to say your secrets are safe with me not even funny but if u don't make a joke about it your just end up crying so I keep making jokes about it as they say laughter is the best medicine it is but not for your head when you have chiari but I'd rather laugh then cry I do cry a lot but I also try to keep laughing n smiling I've had my new scans n reports back on top of what I had anyway I now have osteoporosis also of the spine n neck ddd my spine is twisted quite a bit it looks like et phone home sat inside of me on the scans my pelvis has collapsed so bad on the left there is holes init I have post surgical mature damage a cord signal change were c1 should be mine was removed the also removed to much of my skull so my brain just slumped into that big gap I also have spondylosis of neck n spine n spinal cord thinning in the neck n lower back from lumbar down a syrinx in the lumbar down and a long slender syrinx in the cervical neck down to t9 2 weeks ago I went into see a vascular surgeon about my left leg n my foot going black my last pelvic scans from dec that I had from wen I was hit by the van showed I have no hip socket left n no hip joint left on the left side so it's not a vascular reason my foot is going black he said it were the leg is paralysed n doesn't move and were I have no hip or hip socket my pelvis is pushing down into that space cuz of the weight of my leg n it being fused I have to sleep with my leg tucked under my right butt cheek I always have since my leg was like this to stop pelvic pain.n me screaming in pain he told me the leg is doing more harm then good n its just in the way so wanting to amputate this year at first I said I wasnt scared I think that was just a front n me thinking oh wat ever the more time I've had to think about it the more I'm getting scared I have to see a amputation psychologist first then back to see him with a date I suppose in June ‍♀️ so I go in this week just for stomach tube changes then have about 100 appointments for this year got to try n keep my mind of all this it's hard il get through it some how got to try my hardest to soldier on for my daughters sake I don't want her to grow up a solider n take on wat ever is thrown at her I no it's hard n sometime I get so frustrated n don't want to do it no more but God never put me here for no reason if he didn't think I could handle it he wouldn't of put me on this earth to take on the world n keep carrying it on my shoulders i was put here to be tested just like everyone else just in a very different way sometimes I think wat did I do in my last life to deserve this but then remember we are all her to be tested healthy or health problems every single one of us r here for that reason chiari n syringo n all the comorbidities that come with it is a joke but its are test I suppose eb n all its comorbid conditions that come with it again tested healthy not a problem with you still here to be tested by God like one of are baby chiari sisters say God is big real big n how true is she
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So the passed few weeks my life has been deteroating quit fast I habe a staph infection in my blood from having a super pubic tube put in all my Nero symptoms are getting so bad my right side is getting very weak I'm not registering very well I'm not remembering a lot my pain levels is through the roof for the passed 10 days carers have been waking me n I've been opening my eyes but not responding not able to talk jus glaring at the ceiling they say like I'm not there I habe no memory of the morning what so ever as I'm stuck in a bed or a wheelchair I'm getting so much lower back pain going into my bum burning like mad n I'm finding it very uncormfotable to sit as before wen j could walk years ago I would stand to release this pressure I'm not able to no more As I can't stand I have to deal with it it can make me cry like made my pelvis has literally collapses now on the left side they told me this the other week wen I was hit by a van in my wheelchair n rushed into hospital to make sure my pelvis wasn't broken or hip they were more concerned about the bottom of my back n my tilted pelvis wen they saw the scan I'm finding it hard to put my arms out I'm getting so much pain in the back of my neck round the side of my head into my ear face and jaw this is making it extremely difficult to even swallow fluid as the pain is to much I can't poke my tounge out I keep getting very bad chest pain my bp don't no wat to do with it's self I'm getting very scared about all this morning stuff n having no memory way so ever of cares coming into me or speaking to me or me even opening my eyes yes I'm not talking I'm jus glaring one day sperntly I did try to talk but was making no sense and couldn't work out what I was saying since being hit by a van my symptoms have got a he'll lot worse especially this new thing of waking up unresponsive (usally thd min u calk my nsmr im awake)with my neck being very stiff tight burning like j said round my face head jaw n ear also getting a Sharpe poking pain between my shoulders more to the right side tho so it hurts to move my arm out I'm getting so scared of what is to come also jus been diagnosed with a serious case of olcerated colitis to this is mad crazy painful to my cysts in my spinal cord are getting bigger n pressing to much pain is unbearable bed n in tears daily atm cuz of it im getting very tiered n that is not me I'm insomniac so ppl that no me no I'd don't keep sleeping the way I do I've lost about another stone in weight with the right arm getting so bad I'm scared my hand is gone a start to close like my left one did wen I had on of my brain surgeries as it's hurting an to open it or hold anything n I'm finding it easier to keep it shut I really don't want this to happen if that hand goes I don't no how I'd cope I'm so desperate for this operation right now I am not the only one getting concerned and that's what's making me more concerned as carers are more concerned n the nurse are in shock then keep telling me this isn't you im so confused every day from this weird wake up thing weather in having a seizure in my sleep or not I really have no idea I've only done that 3 times in my life but should it be happening everyday it's weird my only memory is from 11am on words I'm some times arguing with the carer saying coming y haven't you been look at the time n there like venitia we came in this morning you looked at us but wouldn't talk or we did come inndont u remeber taking your meds cup of me no I ďont but they have been in akeelah has told me they have i jus have no memory wat so ever of them visiting n j keep being sick in my sleep to
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£1,322 of £100,000 goal

Raised by 57 people in 14 months
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Zoie Kennedy
2 months ago
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6 months ago
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Anna Mould
6 months ago
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6 months ago
£50
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11 months ago
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12 months ago
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13 months ago
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