Help Kate save her Brain and Spine

I'm Kate, and I live in a little village in Wales called Pontneddfechan. 

Ever since I was born I have been extremely stretchy. At first I thought it was just a gross party trick to dislocate my shoulders, hips and fingers. 
Now I am older I realise that this is actually a rare disease called Ehlers Danlos Syndrome. 
EDS is a rare connective tissue disorder that affects the collagen production in your body. Normally, your collagen provides structure to your cells like cement. Mine is like rubber and causes my ligaments, skin, joints, everything to be extremely stretchy. 
This causes a multitude of problems internally that your body can't cope with. 
For me it presents with postural othostatic tachycardia (POTS) which causes disabling headaches, temperature regulation problems, blindness when I stand, extremely high heart rate and extreme fatigue. 
My joints are extremely painful, as my body cannot support them due to how stretchy they are. 
But most importantly, I have chiari malformation in my brain and Cranio-cervical instability. Due to how stretchy everything is, my brain is being pulled through the opening at the base of my skull, crushing my brain stem. Your brain stem is so very sensitive and controls so many bodily functions. 
Due to this compression I experience numbness and weakness all over my body, bladder and bowel problems, severe headaches, balance problems and memory issues. 
The Cranio-cervical instability is my neck crushing itself. Every time I turn my head, this causes horrible pain, my arms do not work and I cannot hold my own head up without support.
Ehlers Danlos is THE MOST under researched and underfunded disease in medical history. It affects one in 5000 people. And there is little to no treatment options in the world. No NHS plan for this and no help available. So private healthcare is the only  option for us due to lack of  research  data. 
There are four surgeons in the world that can fix my neck and brain. There is one in the UK. He is an EDS specialist, who can stop 80% of my symptoms and give me my life back. 
He will fuse my skull to my neck and also decompress my brain to give it more room, to reduce the pressure. 
He will also use my data to inform the national spinal registry, to build research data, that will eventually inform NICE guidelines, so that other EDS patients can receive this treatment on the NHS. 

I have a 6 year old son, who is just wonderful and his mum is in bed pretty much all of the time. In pain. 
I had private medical insurance through my work and the insurance company would pay for this kind of surgery. But because the amount was so much, they found a way to deny me the cover and told me that it is experimental. I was in my hospital gown ready to go to theatre and they pulled the funding. And denied me treatment. This was one of the most traumatic experiences of my life. 
The only thing I can do now, is raise the funds myself.
The surgery is almost £37,000. I will put all my savings in, I am selling my car and jewellery too, and the rest will need to be raised by kind people like yourself. 
I will also have to pay for months of physiotherapy. 
I have been unable to work for 18 months. I manage clinical trials and work to help patients like me gain the data needed to support new treatments. And I am in the position that I'm trying to prevent professionally: rare diseases needing new treatments, that the NHS don't recognise.
I just want to get back to work and continue my career in medical science. 
If you can help in any way. I will owe my life to you and a debt I cannot repay. But, I can continue to fight for other Ehlers Danlos sufferers, to help them get the treatment they deserve. 
Thank you for reading my story. Wishing you health, happiness and love. 
Kate. Xx