Life throws trials at everyone and despite a constant battle with a complex and life-limiting medical condition, I am determined to keep smiling.
I have Ehlers Danlos Syndrome which has caused my entire digestive system to fail, my joints to dislocate easily, my spine to collapse and my brainstem to become crushed. Every system in my body is affected from my heart, immune system, nervous system and more. I am losing my sight for the second time, am fed directly into my heart and require 24hr care.
I have developed a complication called Cranio-Cervical Instability which means my upper spine in my neck is too weak to hold the weight of my head. This is causing dangerous dislocations in the neck which can result in an internal decapitation. The condition is causing me to lose my memory, struggle with basic cognitive tasks, it is causing sight loss, balance problems, and could go on to develop seizures, paralysis and even death.
There is no surgery options here in the UK so my only choice is a wonderful neurosurgeon in Spain who is treating people with EDS. Surgery will fuse my entire neck so I will loose all movement in my neck, but it will put a halt to my deteriorating symptoms. The surgery and associated costs come to £70k which is why I need your help.