Urgent Help Needed To Make Leah Safe

I need your help for a second time... I’m in a big and scary mess. I keep losing the use and strength of both legs and arms, I can’t support my own head or turn it without causing something to go numb or lose the use of some part of my body. I’m having stroke like symptoms where I lose my speech, my whole left side goes numb and I have scary periods of altered consciousness. My heart is struggling, so is my blood pressure. My tongue, mouth and nose have been permanently numb for just over 6 weeks and my breathing is intermittently affected. I’ll spare myself of telling you the more embarrassing stuff but my body’s deteriorating quickly by the week. Firstly thank you to everyone who donated and fundraised last year, I really couldn’t have gotten this far without you. Although I’m permanently confined to my bed almost 22 months later the money you all donated and raised has been spent on lots of private consultations, scans and of course my “carry on hospital” style, lie down wheelchair. The money you donated has brought me to the point where I think I’ve found what’s happening to me. The upright mri at the Medserena reported on by Professor Smith has picked up what he believes to be instability at the very top of my spine. (Aai) Atlantoaxial instability to be precise. I need to raise funds as quickly as possible so that I can move forward in securing a firm diagnosis and then try to come up with a plan. Aai is not something that will wait. Aai is not something that you can just leave and everything will be ok. Everything is far from ok now and most days I am now fearing for my life. To fear for your life on a daily basis rocks you to your core, it strips your security, your mental health, your personality, your relationships and so much more. I don’t know who I am anymore. Aai can’t be dealt with in Wales and potentially not the uk at all. It requires dangerous surgery that takes an experienced and probably crazy surgeon to undertake. The team for the job is Dr Gilete and his colleagues in Barcelona. I’ve come so far on this journey already and there’s no way I’m giving up now. My children need their mummy and deserve more than a mummy who’s just about existing, they deserve more and so do I. I’m 37 years old with no medical training yet I find myself having to be my own doctor, my own researcher and even though I’m in bed 24/7 I’ve been left completely alone to figure all of this out by myself. I have to work out what scans, what specialists, who might be able to help, what move to make next and in what order while being as accurate with funds as possible so as not to waste any money that will hold up the next needed appointment. I don’t have a doctor fighting my corner or trying to figure out what’s wrong with me and don’t have anyone coordinating my care (or lack of it). The donations from last years go fund me ran out around the summertime so the last 6 months private appointments have wiped me out financially and left me more than struggling. This is where I need your help again. I am in need of several more private appointments, most are in London. I need to cover fuel costs and of course overnight stays. I’ll post a detailed breakdown of how much and what for. I also need Dr G’s team in Barcelona to go through all of my scans with a fine tooth comb and report their findings to see if they can help which is yet again private and again not cheap. My daily symptoms are nothing short of terrifying yet there’s no point in calling an ambulance and going to a&e because they can’t help me. My symptoms are all pointing towards brainstem compression, our brainstem controls all our vitals that keep us alive and it’s certainly not somewhere you want to have problems. I think that’s enough said on that. Again I desperately and quickly need an injection of funds to be able to secure a firm diagnosis and to hopefully move forward with a plan to make me safe. In addition to the above as a lot of you know I’ve been also suffering with a Cerebrospinal fluid leak due to a lumbar puncture back in March 2017, as debilitating and serious a Csf leak is, it has to be put on the back burner for now. I have also recently discovered that I have internal jugular vein compression on both veins which again comes with its own complications. I’m struggling to see anyone on the nhs about it as the Dr is in England and I’m in Wales so again this needs to be dealt with privately. As I’m sure you can appreciate my body is broken so if you are able to donate that would mean the world and if you’re not able to donate but you can share, that would mean the world too. Please help in anyway you can. Leah x Ps below is a breakdown of what I need Appointment with Mr Ulbricht £250 Barcelona assessment £600 Appointment with Dr Higgins £580 Appointment with Mr Malik £285 Appointment with Prof Grahame £350 4 x fuel £400 4x hotel £300 Aspen vista neck brace £140 Total £2905.00

Donations

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  • Barbara Luetchford  
    • £5 
    • 37 mos
  • Ann Doherty 
    • £5 
    • 40 mos
  • Lyn Pollen  
    • £20 
    • 40 mos
  • Anonymous 
    • £10 
    • 40 mos
  • Paula Devlin 
    • £44 
    • 40 mos
See all

Organizer and beneficiary

Debbie Smith 
Organizer
Prestatyn, Wales, United Kingdom
Barry R Smith 
Beneficiary
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