Carrie's Life-Saving Surgery

For: Carrie Beckwith-Fellows
England, United Kingdom
Organizer: Carrie Beckwith-Fellows
Carrie's Life-Saving Surgery (Carrie Beckwith-Fellows)
£936
of £70,000 goal.
Raised by 42 donors
1% Complete

The Story

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.

Fundraiser Updates

Posted on May 28, 2017

UpdateImage

Posted on May 28, 2017

I have received the results of my upright MRI scans and have spoken with the specialist neurosurgeon in Barcelona. My spine is dislocating whenever I turn my head left or right and I also have instability lower down in my neck which is pressing down on my spinal chord. Surgery is my only option and will fuse my spine from my head right down to the bottom of my neck. (C0-C6). This will result in total loss of movement in my neck but should hopefully put a halt to my symptoms. The specialist doesn't know if I will regain my sight but my memory and cognitive symptoms should improve. In the meantime I must wear my rigid collar whenever I am travelling in the car, in my powered wheelchair and on days when I am struggling to hold my head up. 

So now I begin the huge task of trying to raise £70k for surgery.

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