I HAVE NOW HAD SURGERY. I AM KEEPING THE FUNDRAISER LIVE IN HOPE OF REIMBUSING MY AMAZING FAMILY. THANK YOU FOR ALL YOUR GENEROUS SUPPORT! 
 
Hi, my name is Holly. 
 
If you could please take a moment to read this message I would be most grateful. 
 
I am currently very poorly and under the care of US Neurosurgeon Dr Fraser Henderson who specialises in craniocervical junction fusions for people with Ehlers Danlos Syndrome (a connective tissue disorder caused by faulty collagen genes). EDS is very poorly understood and there are limited treatment options in the UK, especially for complex cases, so I had to fly to America for my care. 
 
MRI and CT imaging have confirmed I have Craniocervical and Atlantoaxial Instability in my neck causing my spinal cord to be abnormally stretched leading to cervicomedullary syndrome. 
 
I have been in a huge amount of pain for 14 years, and it is only becoming progressively worse. At its onset I had only musculoskeletal pain, but over the years it has progressed to neuropathic pain in my face, head, eye (effecting vision), left arm and left leg. More recently I have developed weakness/numbness down the left side of my body and neurological tremors.
 
The recommendation is a occipitocervical fusion from the occiput (skull) to C2, a bilateral occipital neurectomy and left C3 neurectomy for occipital neuralgia. 
 
As you can imagine my current symptoms and the recent findings are quite scary. But I am on my last leg, quite literally, and willing to try anything to avoid the progression of this condition, and to have some relief from the chronic pain. 
 
My quality of life is very poor. I post photos of me smiling, with my friends or family, or in nature, but on the inside I am struggling immensely. Ehlers Danlos Syndrome and specifically CCI/AAI has frankly robbed me off a normal life. 
 
I am a very resilient person and I will not let this condition break me. I will fight it. 
 
This brings me to you. I need your help! 
 
The National Health Service does not, at present, perform Craniocervical fusions on people with Ehlers Danlos. 
 
The above has resulted in UK patients having no treatment pathway. If conservative measures such as physio and pain relief medication/injections have failed there is nothing else left for us. We inevitably are left in debilitating pain, and forced to go abroad at a huge cost to ourselves and our families. In most cases we are having to resort to fundraisers or borrowing. 
 
This brings me to disclosing my own financial situation as I feel that's only right. 
 
I am currently on sick leave but usually I work part time as an administrator and activities coordinator at a hospital. Over the last year I have had to substantially reduce my hours due to pain and this of course has impacted my salary. Now that I'm on long term sick leave and have exhausted reasonable work place adjustments I will be officially dismissed on the grounds of capability on August 4th. Until that happens my salary has been halved. Unfortunately I don't have any savings. 
 
My own situation aside I feel it right to mention that I have a hugely supportive family. They support me emotionally as I navigate my health problems, and financially with groceries and medical bills. I am currently spending thousands a month on consultations, scans, blood tests, physio, medications, the list goes on. The NHS despite it's best efforts won't cover it all and my health is deteriorating fast. 
 
My Dad recently sold his house and is putting all the sale money towards the operation, travel abroad, accommodation abroad, and post op care. This has put huge financial strain on both him and his partner who we both live with. The op, after care (specialist physio, equipment to help with fusion/bone healing) and travel/accomodation comes to around 100k. Even with Dad and extended family contributing every £ they have we are still far short of our target. 
 
I feel tremendous guilt asking my family to spend this kind of money. I wish I could live an independent life where I could provide for myself and live without debilitating pain. I know my family love me and would do anything to help me but I feel this guilt never the less. 
 
For this reason I have decided to start a gofundme. It will help me help my parents, even if only a little. 
 
I would be hugely grateful if any of you reading this could donate. Even £1. It all adds up. If you are not in a position to donate (I know times are tough) then please share my gofundme as widely as you possibly can, and use any contacts you have to help me. 
 
With so much gratitude and love! 
 
Holly xx 
 
P.s I want to add that I appreciate and love the NHS very much. They have cared for me since I was a teen providing me with medications, consultations with various specialists, and pain management programs. I am incredibly grateful for the treatment I have had up to this point. I am also very proud to have worked in the NHS. It is truly a wonderful institution. 

Unfortunately though there is no surgical treatment for EDS/CCI patients. It took a very long time to get my diagnosis and access appropriate care, and there is still so much more research needed. One day I hope research will lead to improved care guidelines, surgical treatments for advanced cases of CCI, and a better understanding within the medical community and wider society on the complexity of this condition and its comorbid disorders.

Alan King

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Help Holly get her head screwed on

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

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Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

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OneTrust next-app audience

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Fund is in English speaking country

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Android v12.11.0 and above

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Payment method type group to be vaulted on success

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Share Text generation Skip Fundraiser

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Payment Identity Transfers ATO Risk Check (Targeted) - Production

Fundraiser Saved Payment Method Rate Limit Bypass (Production)

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Version 9.2.1 and above

AUD Donation Upsell audience

fundraiserCountryCode is US/EN

Active Fundraiser - Smart Default Cadence

DAF Internal

Vault on success card payment method

Platform is iOS v11.0.0 and above

Desktop users

Person ids

United States (US) users

allow yuno fundraisers for test

Mexico country code

Posters INTL

NPO Profile Opted-In

iOS at or above 12.4.0

non-US recurring donors

Canada Campaign Owner Group

Fundraiser Without Meta Link

Scheduler payment tester gorup

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Charities allow to be claimed unclaimed (PRD)

Canada (CA) users

UC Tipping v20250115 International

pymk_production_xplr_fe_team

Android at or above 12.2.0

Profile photo entry point audience

smart goals (fundraiser/manage) on test01

Activity Tracking v1 Beta Testing

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

NPO upsell education category

unclaimed charities

prod_ach_audience

AI Chatbot Audience

amp13 only new funds (prod) (anyword auto)

UC Flow Enabled (Prod)

Payment Identity Beneficiary Verification - Production

shared notification bell audience

Custom users

ach frontend audience

Android v11.0.0 and above

Users Receiving Payments Paused Notifications

smart goals test01

Manage Coach - US English Organizers Only + new funds only

Team EGG - IP Address list

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UC Tipping v20250107

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Native 11.4.0 and higher

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GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

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Excluded funds - Video Sharing

NPO upsell animals category

NPO upsell disaster relief category

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

NPO upsell essential needs category

NPO upsell medical category

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Localized Currency

NPO upsell cancer category

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

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challenge-fundraisers

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CAD Donation Upsell Audience

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NPO Profile Opted-Out

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

Help Holly get her head screwed on

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