Carrie's Life-Saving Surgery

For: Carrie Beckwith-Fellows
England, United Kingdom
Organizer: Carrie Beckwith-Fellows
Carrie's Life-Saving Surgery (Carrie Beckwith-Fellows)
£6,021
of £100,000 goal
6% Complete
Raised by 274 donors

The Story

I have a rare genetic condition that is causing my spine to collapse crushing my brainstem and leaving me with catastrophic damage. There are no treatment options available for me in the UK so my only hope is life-saving neurosurgery in Spain. 

Time is running out as my condition is now in the advanced stage which means I MUST have this surgery this year (2018) or I am unlikely to survive. This leaves me with just a few months to raise the entire amount.

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 April 11, 2018

UpdateImage

Posted on April 11, 2018

*** URGENT UPDATE ****

Due to the rapid deterioration in my condition we have been forced to book the surgery for September. Even more devastating is the discovery that I also have spinal chord damage at the base of my spine which needs urgent medical intervention or it could lead to paralysis. 

As a result the total to be raised is now £100k and we have just FOUR MONTH to raise this!

We have a wonderful team of volunteers helping to run the Carrie's Fund campaign and facebook page. They are also working flat out managing all of the fundraising activities people around the country are offering to do for Carrie. We have a number of facebook based auctions and raffles, we will have hoodies and other Carrie's Fund merchandise to show your support and we have some exciting competions coming up for you and even your furry friends to get involved in.

But this is just a small fraction of the amount of work we need to do to raise the £100k to get me to Spain in time. So we need as much help as possible. 

Can you bake a cake and raffle it off? Shave your head or do a fun run? Would your work collegues be willing to devote a work day to Carrie with everybody wearing zebra print for the day or a neck scarf? Will your school do a non-uniform day?

Please join us at www.facebook.com/carriesfund to get involved and show your support.

email [email protected] if you need any help with organising an evemt or want to help in any other way.

Posted on April 6, 2018

UpdateImage

Posted on April 6, 2018

I recently underwent a surgical procedure to be inject botox into my bladder wall. My bladder began failing a few years ago around the same time as I started losing some of my sight. We now know that this was probably the first obvious signs my spinal chord was being damaged. In 2016 I had a permenant catheter placed through a small hole in my lower abdomen to drain my bladder 24/7 but this left me with constant severe pain. The botox injections lock the nerves in the bladder and stop the pain. So far they are working great. However, botox can cause permenant damage to the bladder and the more I have the higher the risk my bladder will be permantly damaged. This is just one reason why the surgery to fix my spine is so urgent. If the surgery is successfal I may regain my bladder function and get rid of my catheter for good. However, the longer it takes to get my surgery, the more botox I will need and the less chance of having a fixable bladder.

Posted on March 29, 2018

Posted on March 29, 2018

My condition is deteriorating quickly and I am running out of time. I have many tragic and serious symptoms due to the cervical instability including losing my ability to read, tell the time, spell simple words, understand language, more sight loss, short term memory problems and further loss of mobility. I use my wheelchair most of the time now, use apps to help me communicate, use apps and tools designed for people with traumatic brain injury to remind me to do simple tasks like brush my teeth, get dressed etc.

I now need an assessment to determine the severity of the cognitive symptoms but the NHs waiting list is 6months so we have to now look for a private funded option because things are changing rapidly and can not wait 6months.

I have also been informed that when I go to Spain for my surgery I cannot take my own TPN with me - the special solution that is infused into my bloodstream via a Hickman line. This is how I eat and drink. So we have to pay for the Spanish hospital to make and provide my TPN. This is very expensive treatment. I have also been informed that I need a special medical complication insurance policy which will cover any extra surgery or treatment I need when I am there due to unforeseen complications such as infection. There are other costs which I was not aware of when I started this campaign so am going to need to increase my funding target. I am working with the Spanish hospital to work out how much extra I will need.

Time is running out. I need this surgery urgently. I am talking months not years. Please share and help in any way you can.

To give you an idea of how the CCI is affecting my cognitive ability, here is a video of me trying to ask a simple question : 


https://www.facebook.com/carriesfund/videos/821013928093550/

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