<div>This is my 29-year-old relative Mathilda.
</div>
<div>A previously happy, creative, adventurous, dancing young woman. However, now she’s been very ill for many years, without any proper care. The worst since nine months back, where she hasn’t even been able to sit upright, without getting a pounding headache amongst numerous other severe symptoms. They have mistrusted her and refused to do the proper medical examinations, even though her symptoms match a neurological diagnosis that’s called Spontaneous Intracranial Hypotension (SIH). Which means that there is a leak of cerebrospinal fluid in the spinal canal, which creates a low cerebrospinal fluid volume and further makes it difficult for the individual to be in an upright position, as this creates low pressure in the brain.
</div>
<div><br />
</div>
<div>A risk factor for suffering from this serious condition is if you live with some form of connective tissue diagnosis, because leaks occurs in the dura mater (the hard covering of the brain that consists of connective tissue). Mathilda has previously been diagnosed with h-EDS (hypermobile Ehlers Danlos syndrome), which is a connective tissue syndrome. Despite this connection, the healthcare system has not taken this into account, but has distrusted her and not helped her get proper care that she is in desperate need of.
</div>
<div><br />
</div>
<div>After many months of struggle where she finally believed she had fought her way to the right help, they have not been able to identify the fault.
</div>
<div>The situation is becoming more and more critical, as it has progressed to the point where the headache is no longer relieved more than slightly when she lies down. At first it disappeared in this position. There is also no direct medication for this severe condition, only surgery or other procedures is needed to close the leak. She is therefore only on Paracetamol for this severe pain condition and therefore needs help as soon as possible, as this is unbearable.
</div>
<div><br />
</div>
<div>However, now she has contacted Europe's SIH specialists in Freiburg, where they have now analyzed Mathilda's MRI images and believe they see clear signs of SIH. They have assessed the risk of her being affected by the condition as a 6 on the Bern score, which means a high chance of them finding the leak. They also believe that Mathilda may have suffered from this condition for much longer than she herself suspected and contributed to her already severely disabling medical condition.
</div>
<div>Therefore, they believe it is of utmost importance that Mathilda comes down to them as soon as possible and undergoes relevant examinations, investigations and further procedures or surgery.
</div>
<div><br />
</div>
<div>Due to the low level of knowledge about this condition and the lack of research, local hospitals often fail to detect or treat spinal leaks. However, the few specialized centers in the world have managed to help people who have been disabled for many years. People who were mistrusted and did not receive relevant care in time have been given a new chance at life, after being bedridden and unable to sit up for several years.
</div>
<div>Therefore, it is of utmost importance that Mathilda can get this chance to regain her quality of life and no longer have to lie down, day in and day out, and watch her youth pass by, forgotten in a bed.
</div>
<div><br />
</div>
<div>There are many of us who support and encourage her to persevere when the healthcare isn’t enough and helps her, but she is having a very tough time.
</div>
<div>To neither even being able to sit up anymore, nor being able to go out for over nine months is incredibly difficult for an individual who actually loves to be active and creative.
</div>
<div>She feels socially isolated and forgotten. As if her body is a prison and she is wasting away.
</div>
<div>We want nothing more than to help her feel better and get an ounce of vitality back.
</div>
<div>Therefore, we appeal to you to help us help her get the proper care and a brighter future.
</div>
<div><br />
</div>
<div>UPDATED!
</div>
<div>The cost estimate from the University Hospital in Freiburg is 32,000 euros.
</div>
<div>However, the amount is variable, as there may be additional costs for the treatment afterwards.
</div>
<div>In addition, there are costs for;
</div>
<div>- Flight tickets back and forth
</div>
<div>- Accomodation
</div>
<div>- Food costs
</div>
<div>- Medical costs
</div>
<div>- Transfer back and forth to the airport
</div>
<div>- Any medical aids
</div>
<div>- Unforeseen costs
</div>
<div><br />
</div>
<div>I, who am responsible for the fundraiser in Sweden is called Laima and is the mother to Mathilda.
</div>
<div><br />
</div>
<div>I, who am responsible for the fundraiser in the US is called Nura and is the godsister to Mathilda.
</div>
<div><br />
</div>
<div>PLEASE NOTE: The smiling pictures of Mathilda were taken before she became bedridden!
</div>
<div><br />
</div>
<div><br />
</div>
<div>Relevant links about the condition and the university hospital;
</div>
<div><br />
</div>
<div><a href="https://www.facebook.com/share/v/15ZzLoMdha/?mibextid=wwXIfr" target="_blank" rel="noreferrer noopener"><a href="https://www.facebook.com/share/v/15ZzLoMdha/?mibextid=wwXIfr" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.facebook.com/share/v/15ZzLoMdha/?mibextid=wwXIfr</a></a>
</div>
<div><br />
</div>
<div><a href="https://spinalcsfleak.org/" target="_blank" rel="noreferrer noopener"><a href="https://spinalcsfleak.org/" target="_blank" class="" rel="nofollow noopener noreferrer">https://spinalcsfleak.org/</a></a>
</div>
<div><br />
</div>
<div><a href="https://www.uniklinik-freiburg.de/neurochirurgie/schwerpunkte/csf-center/csf-center-en/sih-en.html" target="_blank" rel="noreferrer noopener"><a href="https://www.uniklinik-freiburg.de/neurochirurgie/schwerpunkte/csf-center/csf-center-en/sih-en.html" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.uniklinik-freiburg.de/neurochirurgie/schwerpunkte/csf-center/csf-center-en/sih-en.html</a></a>
</div>
<div><br />
</div>
<div><a href="https://lakartidningen.se/klinik-och-vetenskap-1/medicinens-abc/2023/10/abc-om-spontan-intrakraniell-hypotension/#comments" target="_blank" rel="noreferrer noopener"><a href="https://lakartidningen.se/klinik-och-vetenskap-1/medicinens-abc/2023/10/abc-om-spontan-intrakraniell-hypotension/#comments" target="_blank" class="" rel="nofollow noopener noreferrer">https://lakartidningen.se/klinik-och-vetenskap-1/medicinens-abc/2023/10/abc-om-spontan-intrakraniell-hypotension/#comments</a></a>
</div>
<div><br />
</div>
<div><a href="https://neuro.se/diagnoser/spontan-intrakraniell-hypotoni-sih/" target="_blank" rel="noreferrer noopener"><a href="https://neuro.se/diagnoser/spontan-intrakraniell-hypotoni-sih/" target="_blank" class="" rel="nofollow noopener noreferrer">https://neuro.se/diagnoser/spontan-intrakraniell-hypotoni-sih/</a></a>
</div>
<div><br />
</div>
<div><a href="https://ehlers-danlos.se/vad-ar-ehlers-danlos-syndrom-eds/" target="_blank" rel="noreferrer noopener"><a href="https://ehlers-danlos.se/vad-ar-ehlers-danlos-syndrom-eds/" target="_blank" class="" rel="nofollow noopener noreferrer">https://ehlers-danlos.se/vad-ar-ehlers-danlos-syndrom-eds/</a></a>
</div>

Anonymous

Lars van der Heeg

Elizabeth

Nura Luke

Christopher Jackson

Help Mathilda get urgent treatment for spinal 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

fund country is US and user language is English (amp15)

Gift cards donation status audience

proCampaignId

p2p legacy startfundraising page

PoDo Incentive audience

AMP24 New Funds Only PROD (DO NOT MODIFY)

countryCode

charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

NPO Upsell without email opt-in

Auto Thanks Feature Audience

International Only

fundId

braze fundraiser group 

Sitewide Banner: CA + en_CA

Fundraiser Saved Payment Method Rate Limit Bypass (Production)

leaderboard-partner-id-audience-givepanel

New funds eligible - Video Sharing (PROD) (amp17)

Version 9.2.1 and above

AUD Donation Upsell audience

fundraiserCountryCode is US/EN

US Related Communities

DAF Internal

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

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)

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

Excluded funds - Video Sharing (amp15)

smart goals test01

Manage Coach - US English Organizers Only + new funds only

Team EGG - IP Address list

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

checkout headers audience

Users Receiving Braze KYC Validation Failed

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

donationAmount

isDafPay

isEligible

isNPOEmailOptIn

partnerId

isMobile

fundIsLinkedWithMeta

hasSessionDonation

categoryGroup

isCampaignOwner

fundHasInstagramDeepLink

Native 11.3.0 and above

Native 11.4.0 and higher

New funds eligible - Video Sharing (PROD)

NPO email opt-in candidates

GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

Excluded funds - Video Sharing

Fundraiser Without Instagram Deep Link (amp15)

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

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

You’re supporting Help Mathilda get urgent treatment for spinal CSF leak

Your donation will benefit Laima Bergsman

GoFundMe protects your donation