PLEASE HELP ME RAISE FUNDS TO ENABLE ME TO TAKE THE NEXT STEP IN STABILISING MY SPINE.
Last year I raised funds in order to have an upright MRI as the NHS refused to fund one. This MRI found several problems within the area of my Cervical Spine, including many levels of Subaxial Instability and also Atlantoaxial Instability. There may be other issues but I need a qualified Neurosurgeon to check out my scan images and medical history.
I was seen by a private specialist Rheumatologist who has tried to help me find a doctor here in the UK to help me. But I keep hitting brick walls. I thought a scan would give me the opportunity to get help, but due to having Ehlers Danlos Syndrome (faulty collagen) no UK doctors will touch me! Not just me, there’s hundreds like myself.
My life is wasting away. I have a soft collar at the moment and have been using my funds donated by a local Baptist Church to pay for highly specialised Physiotherapy to get my neck muscles in the best shape possible. Currently they’re working in completely the wrong way and I don’t even breathe correctly! All due to the constant pain and spasms. Soon I’ll be swapped into a hard collar in order to see if this improves my symptoms. If it does, that means spinal stabilisation surgery is a good option for me.
So now I’m back to fundraising. I’ve tried to get in with NHS neurosurgeons. I’ve literally begged them alongside my reports and referral from my GP. But it isn’t happening. So I am raising money to go private. To see one of the best doctors in the field who works in Barcelona. Money raised is to cover the appointment, travel expenses for myself and a carer and also any extra tests required. Then, when I know for sure what treatment I need, the fundraising starts again to get me to the point I can hopefully have surgery and turn my life around.
My children are nine and two. I have to spend over 90% of my time in bed or resting right now. I’m in constant pain and missing out on most of their lives. I don’t like to fundraise for myself. The thought of an operation on my neck terrifies me. But I need to try. Because I am a mother and I need to be there for my children.