<div>Hi my name is Kathryn and I'm mom to Elliot who is now 24 years old.
</div>
<div>Elliot was diagnosed at 14 years old with Chiari malformation and syringomyleia and a brain cyst at the back of his head . This caused numerous neurological difficulties seizures and severe headaches. It affected his schooling and home life as symptoms escalated Elliot had an intercranial pressure monitoring device drilled into his skull for 24 hrs in Birmingham children's hospital then craniovertebral decompression surgery was performed 3 days later in 2014 at Birmingham children's hospital. Elliots recovery was less than smooth as he suffered a major seizure at the end of the operation where air was trapped inside the basal system of the brain known as pneumocephalus which was life threatening and Elliot had to be on humidified oxygen and at a 30 degree angle while this dissipated during this period his bladder stopped working for a while and a catheta was needed and he suffered a major allergic reaction as his brain was causing delayed issues after surgery.
</div>
<div>Elliot made it home after 12 days and we hoped this would be the new start he was hoping for. However after 3 weeks he started having headaches again only these were different to before not at the back of the head but more centralized crushing headaches. we alerted medical staff and on his checkup he was scanned again and we were reassured that everything was ok. However his headaches continued and Elliot started to have more and more pain relief. Elliot was sent to the neurology clinic where he was tried on medication after medication 8 weeks at a time for each medicine to build in his system in an attempt to control the head pain. medcines such as carbamazapine, topirimate, epilim, sumatriptan, amytriptiline, pregabilin, gabapentin, noratriptiline, zomitriptan, eletriptan, candesartan. This was a very long road and nothing seemed to help and the crushing headaches continued to escalate with other symptoms such as rining in the ears nausea memory issues neck pain pain behind eyes like an ice pick to name but a few.
</div>
<div>Elliot was sent to the pain clinic at GOSH and although he tried even GOSH thought it wasn't the perception of pain being the problem but more his medical condition and sent a report back to the hospital. After this failed to help elliot was sent to a neuropsychologist who tried to suggest that it was the anxiety that was causing his worsening symptoms and as such was refered to CAMHS. They assessed Elliot and blatently sent a report back to the hospital stating that it was not mental health causing his symptoms but the unidentified medical issue not being addressed. when the hospital received this Elliot was discharged from neuropsychology and sent back to neurology and labelled with chronic migraine. They then stated we may never find the reason for these severe headaches so we asked for a second opinion. he tried to refer to another children's hospital but Elliot wanted to see prof Goadsby in London.
</div>
<div>I took Elliot to London where he was assessed and Prof Goadsby stated that indeed he has chronic Migraine but the positional element of his headache suggests that he may have a CSF leak and half of his symptoms correlate to this. He sent a report back to Birmingham children's hospital where he stated that Elliot need a MRI with Gadolinium contrast for better image.
</div>
<div>We attended the scan appointment Elliot went in and came out and when i asked how did the contrast feel he said he didn't have any and to my amazement and disbelief they hadn't done it with the contrast required. I was furious for Elliot as this was yet more wasted time without the correct diagnostic tool being used whilst Elliot still suffered with crippling headaches.
</div>
<div>Elliot had already lost so much he couldn't attend the school he loved he couldn't manage the referral Centre he was sent to the local authority couldn't get a home tutor to him either as they hadn't any available before Elliot was due to leave school. So Elliot became one of these children who's complex health needs resulted in him falling through an educational gap where he wasn't able too finish school take any exams or go to prom like so many enjoy.
</div>
<div>Meanwhile the crippling positional headaches continued and he was transferred care to the QE before his 17th birthday. but he was referred the wrong way round so had to wait 18 months for his first appointment. This hospital gave Elliot some hope as they said they had an interest in conditions like Elliot's.
</div>
<div>Then the pandemic hit so lockdowns started and all hospital appointments slowed which meant only 1 telephone appointment during that period as the NHS was under immense pressure with the devasting consequences of COVID.
</div>
<div>When the pandemic ended Elliot was recalled to the hospital where they referred him to a neurosurgeon to place a wireless intercranial pressure monitor in his brain this was done in June 2023. he's attended several readings and they have been reported as inconclusive as they are slightly low but apparently not severe yet on his clinic notes his diagnosis is intercranial hypotension.
</div>
<div>During 2023 he had 13 admissions to hospital as his pain was out of control and being violently sick . During 2024 he had just as many and 2025 was even worse as the episodes lasted longer and landed him on the stroke unit last October for 10 days.
</div>
<div>his Neurosurgeon last week stated that there is nothing that can be done for Elliot at this hospital as they cannot find the leak site or why he has low pressure. They have stated that Elliot has the right to a second opinion elsewhere and they will help in any way they can with this.
</div>
<div>Its now time to think outside of the box CSF specialists in this country are few and far between and sometimes the techniques and scans they use here just do not show the leak . Countries elsewhere like The united states have dedicated center's of excellence for conditions like this and are able to give the answer needed for correct evaluation treatment
</div>
<div>Elliots had to live lying down 95% of the time for the last 10 years to even get to this point and diagnosis but this shouldn't be the case should it? its a crippling condition that no child or young man should have to suffer with. I just think that first he was told he may never find an answer then he was told we have found the cause now to be told we cannot do anything about it. No ones hope should be taken away .
</div>
<div>But we are desperately going to need to raise substancial funds to facilitate the test and stay over in America. We are working hard to try and raise as much as we can but are going to have to ask any kind hearted people to make this possible. Every donation will make this possible for Elliot who has been nothing short of really brave considering how much he has been through already.
</div>
<div><br />
</div>
<div>CSF LEAK DESCRIPTION
</div>
<div><br />
</div>
<div>A key characteristic of many CSF Leak symptoms is that they are generally orthostatic. That is to say that they occur principally when standing or sitting, but are often significantly relieved when lying down.
</div>
<div>Symptoms may present themselves immediately upon sitting or standing, or increase gradually over a period of time. A common pattern with many CSF leak sufferers, particularly those with a small or intermittent spinal leak, is that symptoms may only become noticeable or severe later in the day.
</div>
<div>Many CSF leak symptoms are common characteristics of other headache disorders, such as migraine, acute sinusitis, severe tension headache and post-traumatic headache. Research shows that these similarities routinely result in the misdiagnosis of a CSF leak.
</div>
<div>The orthostatic characteristic is, however, a key indicator of a CSF leak and whenever this is present, a CSF leak should not be ruled out. Due to the perceived rarity of this condition and the lack of diagnosis experience in GP surgeries and A&amp;E wards, it may be necessary for those experiencing CSF leak symptoms to specifically raise it as a possibility with their GP or emergency medicine practitioner.
</div>
<div><br />
</div>
<div>Head
</div>
<div>Headaches (frontal, parietal and occipital)
</div>
<div>Heaviness of head
</div>
<div>Feeling of pressure within the head
</div>
<div>Sensitivity of, or tingling sensations within, the scalp
</div>
<div>Dizziness or loss of balance
</div>
<div>Ears/Hearing
</div>
<div>Tinnitus (ranging from ringing and buzzing to pulsatile tinnitus)
</div>
<div>Pressure sensations in the ears/ear popping
</div>
<div>Feeling of liquid in the ears
</div>
<div>Hearing loss (sometimes similar to Meniere’s disease) and dulled hearing
</div>
<div>Eyes/Vision
</div>
<div>Blurry vision
</div>
<div>Double vision
</div>
<div>Pain behind eyes
</div>
<div>Pain when moving eyes
</div>
<div>Facial
</div>
<div>Facial numbness
</div>
<div>Jaw pain/toothache
</div>
<div>Temporomandibular joint pain and stiffness
</div>
<div>Back, Neck &amp; Limbs
</div>
<div>Neck pain and stiffness
</div>
<div>Back pain (area-specific and general)
</div>
<div>Tingling sensations and spasms in the spine, back, arms and sometimes legs
</div>
<div>Other Symptoms of CSF Leak
</div>
<div>Rapid heartbeat, particularly when sitting or standing
</div>
<div>Nausea and, in extreme cases, sickness
</div>
<div>Cognitive decline (including memory loss and loss of concentration)
</div>
<div>coma and death
</div>

Caroline Whitehouse

Anonymous

Helen Catchpole

Debbie Swatton

Harry Foley

debra evans

Hilary Jauncey

Kerry Pardoe

Joanne Bull

Jessica Oleary

Kirsty Flavell

Help Elliot to stand up for more than 1hr a day CSF  Leak

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)

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

Eligible for Profile Comment Badge

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

writePath

Stream Notification

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

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

isEligibleForProfileCommentBadge

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

Help Elliot to stand up for more than 1hr a day CSF Leak

Still £5,051 to go. Help us build momentum.