This short documentary shows my daughter, Beth, five years ago... <a href="https://www.youtube.com/watch?v=AP2k8e-mC-s"><a href="https://www.youtube.com/watch?v=AP2k8e-mC-s" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.youtube.com/watch?v=AP2k8e-mC-s</a> </a> She was, even then, living with a rare debilitating, neurological illness,  Kleine-Levin Syndrome  (KLS) ,  also known as Sleeping Beauty Syndrome, in the popular media, which she had developed at the age of 16 years old. Even through this, during her 'well' periods she worked hard to raise awareness and help others living with this life changing illness. Little did we know that whilst she slept and was mainly bed bound the genetic illness that we were unaware she was carrying was causing massive deterioration and damage to her body.  It was three years ago, in 2016, six years after first developing KLS, that this damage became apparent and we finally started to find answers to the severe and serious symptoms that she had developed. <img src="https://d2g8igdw686xgo.cloudfront.net/42489138_1570290648614857_r.jpeg" alt="42489138_1570290648614857_r.jpeg" width="100%" media_type="3" /> EHLERS-DANLOS SYNDROME Beth was formerly diagnosed with Hypermobile Ehlers Danlos Syndome (hEDS) in June 2016. Ehlers -Danlos Syndrome is an inherited connective tissue disorder that, in short, means Beth's collagen is faulty. Collagen is the glue that holds our bodies together. It is found throughout the entire body and in every organ and so EDS can have a devastating affect on almost every system in the body. It affects each person differently.  For Beth, it means severe daily pain, limited mobility, frequent joint subluxations, prolapses,severe digestive problems  and now, most seriously, instability of her spine. <img src="https://d2g8igdw686xgo.cloudfront.net/42489138_157029070672441_r.jpeg" alt="42489138_157029070672441_r.jpeg" width="100%" media_type="3" /> CRANIOCERVICAL INSTABILITY AND ATLANTOAXIAL INSTABILITY Alongside instability and movement in her lower back which is still being investigating Beth has been diagnosed with Craniocervical instability (CCI) and Atlantoaxial instability (AAI). Basically, her neck is unstable and is at risk of dislocating. Any small jarring or movement could dislocate or dangerously move her spine causing injury to the spinal chord and nervous system.  Also, the arteries that are in this area and feed the brain are at risk of kinking and compression which would lead to a stroke. Infact, Beth has already suffered from at least one suspected TIA  ( mini stroke) and with hindsight we don’t believe this to be her first.  Beth’s neck urgently needs stabilising. She currently wears a hard neck brace to help minimise these risks as much as this allows but this is not a cure or a permanent fix.  The only way way to stabilise her neck is surgery. The surgery she has been recommended as needing is Occipitocervical posterior fusion stabilisation with intraoperative reduction ( traction). It is suspected that Beth also has intracranial  hypertension which again can have devastating repercussions. She will be undergoing tests for this in the near future.  She also has cerebellar tonsill ectopia, which means that, for some reason, the bottom of the brain is descending/being pushed down into the spinal chord. This can be caused by both craniocervical instability or intercranial hypertension, amongst other things. Further tests will hopefully determine the cause and be corrected. Having EDS makes this surgery, and indeed any surgery, more complex. The connective tissue doesn’t act  or heal the same way and makes any procedure and  even the after care much more complex and risky.  A lack of provisions in the UK for EDS related neurosurgeries means that Beth’s only option is to fund this care and travel to one of the world leading experts in EDS related neurosurgeries.   We we have been recommended and been in touch with a Spanish Doctor who we have every faith in and who we believe that Beth will be in safe hands with.  We are hoping to move forward with this and travel to Barcelona in the near future. <img src="https://d2g8igdw686xgo.cloudfront.net/42489138_1570290772248343_r.jpeg" alt="42489138_1570290772248343_r.jpeg" width="100%" media_type="3" /> BETH’ LIFE AT PRESENT During the last three years there has been a dramatic deterioration  in Beth’s health.  She is now 25 years old. She has gone from a fit and active young woman, who enjoyed sports and keeping fit, participated in many hobbies, had an active social life and had high hopes and dreams for her career and future, to someone who uses a wheelchair and finds even spending any length of time sitting up tiring and painful. She is in severe and constant pain, needing constant heavy pain relief and has a whole host of other symptoms that increasingly leave her feeling very ill and bed bound, unable to even carry out the most basic of tasks.  The longer she is left without treatment, the more she will deteriorate and the lower the chance of a good recovery. PLEASE HELP  We are completely overwhelmed with not only the severity of her condition and the daily risks she faces but with the daunting task of raising such a huge sum of money in order to save her life. But we have no choice, we HAVE to raise this money and save my beautiful and precious girl. But we cannot do this alone. We need your help. We need you! Please, please, please help us.   Please donate.  Please share this campaign far and wide, on social media, with your friends and family, with anyone and everyone.  Please consider organising a fundraising event. Please ask businesses or your boss if they will donate or even donate an item for auction.  We need this out there. I know we can do this together.  We have to do this.  Please feel free to contact me with any ideas you may have to promote this campaign or raise funds.   Thank you all so much.

Paula Trivett

Lauren Jade Blain

Nicole McCann

Anonymous

Louise Hamblin

Clare Maw

Jacob Hamblin-Pyke

Elizabeth House

#BackBeth

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

dyn_template_ids

Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

Bene transfer V6 and AdyenV6MyMoney Campaign Organizers - production

OneTrust next-app audience

fundCountryCode

NextDoor Share Option Users

Fundraisers with Reactions feature capability

fundCurrencyCode

US + Non-charity COs Only

locale

fund country is US and user language is English

personId

comms-internal-person-ids

Enhanced Story Experience Users

Suggested Goal Experience Users

user language is English and fund country: US, AU, DK, FI, IE, NO, SE, CA, GB; 

Poster share - new funds eligible (newest 9/18)

Streaming widgets beta user

paymentProcessor

3DS payment method

user language is English and fundCountry: US, AU, DK, FI, IE, NO, SE, CA, GB; 

currencyCode

Money Box Donation List Prompt Experiment Audience

GoFundMe Employees

ipAddress

Mark Rieth IP Address

Version 9.2.0 and above

Fund is in English speaking country

desktop

Android v12.11.0 and above

Platform is Android

paymentMethodType

checkoutType

Payment method type group to be vaulted on success

admin pr kit prod

EUR Donation Upsell

Share Text generation Skip Fundraiser

(prod) new funds eligible for amp12 (UGC gallery)

fintrac_cad_idv_form_v2 audience

paymentProcessorAccountId

fallback mode accounts

proCampaignId

p2p legacy startfundraising page

AMP24 New Funds Only PROD (DO NOT MODIFY)

Eligible for Profile Share Badge

countryCode

charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

Supporter Comments Eligible Funds

International Only

fundId

braze fundraiser group 

Payment Identity Transfers ATO Risk Check (Targeted) - Production

Fundraiser Saved Payment Method Rate Limit Bypass (Production)

leaderboard-partner-id-audience-givepanel

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

charityCommunityId

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

NPO recommendations prod

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

Users Receiving Braze KYC Validation Failed

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

isEligibleForProfileBadge

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

categoryGroup

isCampaignOwner

fundHasInstagramDeepLink

Native 11.3.0 and above

Native 11.4.0 and higher

New funds eligible - Video Sharing (PROD)

GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

isRecurringFriendly

Is Recurring Friendly

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

userCurrencyCode

Localized Currency

NPO upsell cancer category

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

isChallengeFundraiser

challenge-fundraisers

Payment Identity Launch Verification - Production

New funds eligible - Posters v2

CAD Donation Upsell Audience

Braze Email Tester

NPO Profile Opted-Out

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

#BackBeth

Still £84,945 to go. Help us build momentum.