<div><strong> ENGLISH VERSION BELOW </strong>



</div>



<div><br />



</div>



<div><strong>Mi chiamo Ilaria.</strong>



</div>



<div><strong>Vivo a Milano, e da 8 anni combatto ogni giorno contro un dolore che nessuno in Italia è riuscito a risolvere.</strong>



</div>



<div>Ho bisogno del vostro aiuto per raggiungere <strong>uno dei pochissimi centri al mondo specializzato nella mia patologia, prima che i danni neurologici diventino irreversibili.</strong>



</div>



<div><br />



</div>



<div><strong>La mia storia</strong>



</div>



<div>Tutto è iniziato nel <strong>2018 </strong>con forti dolori lombo-sacrali.



</div>



<div>Sembrava una cisti alla vertebra L5, la stessa zona in cui da bambina avevo già affrontato e vinto una cisti ossea aneurismatica aggressiva, grazie a due interventi chirurgici e a una lunga riabilitazione.



</div>



<div>Lo sport agonistico, il nuoto, e un carattere che non si arrende facilmente mi avevano permesso di vivere una vita piena e normale per quasi trent'anni.



</div>



<div>Nel 2018 quel mondo si è fermato.



</div>



<div><br />



</div>



<div><strong>Gli anni del calvario</strong>



</div>



<div>Nonostante<strong> anni di visite in tutta Italia e in Svizzera,</strong> i miei <strong>sintomi </strong>sono stati ripetutamente <strong>sottovalutati</strong>, mentre io mi <strong>aggravavo</strong>: deficit nella deambulazione, debolezza progressiva alla gamba sinistra, difficoltà a stare in piedi, sensazioni di compressione insostenibili.



</div>



<div>Dal <strong>2023 al 2025</strong> ho subito <strong>tre interventi spinali, tutti senza successo</strong>. La cisti continuava a riformarsi. I neurochirurghi, uno dopo l'altro, hanno smesso di seguirmi.



</div>



<div>Quando i medici abbandonano, rimane la famiglia. E la volontà.



</div>



<div><br />



</div>



<div><strong>La diagnosi che cambia tutto: Mayo Clinic, Rochester (USA)</strong>



</div>



<div>A inizio 2026,grazie a mio marito e alla mia famiglia sono riuscita a raggiungere la Mayo Clinic di Rochester, Minnesota, sostenendo <strong>costi interamente a mio carico di circa 35.000 euro</strong> tra spese ospedaliere, vitto, alloggio e supporto.



</div>



<div>Dopo 8 anni, finalmente una risposta.



</div>



<div>Non si tratta di una recidiva della cisti ossea aneurismatica.



</div>



<div>Ho un <strong>meningocele spinale</strong> a sinistra di L4-L5 ed un'importante <strong>chiusura dei forami </strong>L5-S1 con <strong>flogosi </strong>dei tessuti paraspinali, originata da una microscopica lacerazione della dura madre (il primo strato protettivo del midollo spinale) a causa dello stress meccanico prodotto da un dismorfismo vertebrale del tratto lombosacrale e dal tessuto patologico residuo come esiti degli interventi da bambina.



</div>



<div>La Mayo Clinic ha classificato il mio caso come<strong> rilevante per la ricerca spinale internazionale</strong>, raro per complessità e per la <strong>resilienza fisica e psicologica</strong> che ho mantenuto nonostante tutto.



</div>



<div><br />



</div>



<div><strong>Il passo successivo: Francia, Germania o USA</strong>



</div>



<div>Su consiglio della Mayo Clinic, abbiamo contattato il Cedars-Sinai Medical Center di Los Angeles, che dispone di un dipartimento di neurochirurgia specializzato specificamente nel trattamento delle <strong>perdite liquorali spinali</strong> e dei <strong>meningoceli complessi </strong>con <strong>equipe multidisciplinare</strong>.



</div>



<div>Siamo anche in contatto con il <strong>CHU de Montpellier (Francia) e l’Universitätsklinikum Freiburg (Germania), comunque in privato</strong>, per cercare di contenere i costi.



</div>



<div>Tutti questi sono centri presenti nella directory della <a href="https://spinalcsfleak.org/directory/" target="_blank" rel="noreferrer noopener">Spinal CSF Leak</a> per la cura della mia patologia. Come potete vedere accedendovi, per <strong>l’Italia la situazione è drammatica: non c’è nessun centro disponibile</strong>, si consiglia di recarsi in Francia, Germania e a seguito in altri Paesi extraeuropei, per questo mi trovo obbligata a percorrere la strada degli ospedali esteri.



</div>



<div>Indipendentemente da dove andrò, <strong>i costi saranno ingenti</strong>. <strong>Già ora</strong>, in Italia, mi trovo obbligata a sostenere spese extra, dato che devo ricorrere ad <strong>aiuto esterno a pagamento per questioni linguistiche e di coordinamento</strong>, anche perché le mie condizioni cliniche non sono tali da permettermi di occuparmene personalmente.



</div>



<div>La situazione è diventata insostenibile. Devo ricorrere al sostegno e alle <strong>finanze della mia famiglia</strong>, altrimenti già da tempo non sarei riuscita ad andare avanti, ma anche queste <strong>si stanno esaurendo rapidamente</strong>. Inoltre i tempi burocratici sono lunghi. La mia condizione si sta aggravando. E il rischio di deficit neurologici permanenti è reale e concreto.



</div>



<div><br />



</div>



<div><strong>A cosa servirà il vostro contributo</strong>



</div>



<div>A oggi non è ancora chiaro l’ammontare complessivo. Un obiettivo iniziale, utile perlomeno per coprire i primi costi, è raccogliere <strong>75.000 euro</strong> per:



</div>



<div>• Valutazione e intervento neurochirurgico



</div>



<div>• Volo, alloggio e soggiorno presso la struttura clinica per me e un accompagnatore



</div>



<div>• Supporto di coordinamento medico-linguistico



</div>



<div><br />



</div>



<div><strong>A chi mi rivolgo</strong>



</div>



<div>A <strong>chiunque </strong>legga queste parole: <strong>persone comuni </strong>che vogliano fare anche solo un piccolo gesto,<strong> medici o specialisti</strong> in neurochirurgia spinale, perdite liquorali o patologie della dura madre che possano offrire un contatto o un parere, fondazioni e associazioni attive nel supporto a pazienti con patologie rare, chiunque possa <strong>condividere questa storia</strong> e aiutarla a raggiungere chi può davvero fare qualcosa.



</div>



<div>Ogni euro, ogni condivisione, ogni contatto medico conta. E ogni firma! Trovi la mia petizione su Change.org: <a href="https://c.org/gXssFh7GBp" target="_blank" rel="noreferrer noopener">CLICCA QUI</a>



</div>



<div><br />



</div>



<div><strong>Chiedo solo una possibilità.</strong>



</div>



<div>Ho nuotato a livello agonistico. Ho affrontato due operazioni da bambina e tre interventi in meno di 2 anni. Ho vissuto 8 anni di dolore senza mai smettere di cercare una soluzione.



</div>



<div><strong>Non mi sono arresa.</strong>



</div>



<div><strong>Aiutatemi a non doverlo fare adesso.</strong>



</div>



<div>Grazie.



</div>



<div><br />



</div>



<div><em>Ilaria</em>



</div>



<div><br />



</div>



<div><strong>ENGLISH VERSION</strong>



</div>



<div><br />



</div>



<div>My name is Ilaria.



</div>



<div>I live in Milan, and for the past <strong>eight years</strong> I’ve been fighting every single day against a pain that <strong>no one in Italy has been able to resolve</strong>.



</div>



<div>I need your help to reach <strong>one of the very few centers in the world specialized in my condition, before the neurological damage becomes irreversible</strong>.



</div>



<div><br />



</div>



<div><strong>My story</strong>



</div>



<div>It all began in <strong>2018 </strong>with severe lumbosacral pain.



</div>



<div>At first, it looked like a cyst on my L5 vertebra—the same area where, as a child, I had already faced and overcome an aggressive aneurysmal bone cyst thanks to two surgeries and a long rehabilitation.



</div>



<div>Competitive sports, swimming, and a stubborn spirit had allowed me to live a full, normal life for almost thirty years.



</div>



<div>In 2018, that life came to a halt.



</div>



<div><br />



</div>



<div><strong>Years of suffering</strong>



</div>



<div>Despite <strong>countless medical visits across Italy and Switzerland</strong>, my symptoms were repeatedly <strong>underestimated </strong>while my condition worsened: difficulty walking, progressive weakness in my left leg, trouble standing, and unbearable sensations of pressure.



</div>



<div>Between <strong>2023 and 2025</strong>, I underwent <strong>three spinal surgeries</strong>—none of them successful. The cyst kept coming back. One by one, the neurosurgeons stopped following my case.



</div>



<div>When doctors give up, all you have left is your family. And your will to keep going.



</div>



<div><br />



</div>



<div><strong>The diagnosis that changed everything: Mayo Clinic, Rochester (USA) </strong>



</div>



<div>In early 2025, thanks to my husband and my family, I managed to reach the <strong>Mayo Clinic in Rochester, Minnesota</strong>, covering all expenses myself—about <strong>€35,000 </strong>including medical costs, travel, accommodation, and support.



</div>



<div>After eight years, I finally had an answer.



</div>



<div>It was not a recurrence of the aneurysmal bone cyst.



</div>



<div>I have a <strong>spinal meningocele </strong>on the left side of L4–L5 and a severe closure of the <strong>L5–S1 foramina</strong> with inflammation of the paraspinal tissues, caused by a microscopic tear in the dura mater (the first protective layer of the spinal cord). This tear was triggered by mechanical stress from a vertebral dysmorphism in the lumbosacral area and by residual pathological tissue from the surgeries I had as a child.



</div>



<div>The Mayo Clinic classified my case as<strong> significant for international spinal research</strong>—rare for its complexity and for the physical and psychological resilience I’ve maintained despite everything.



</div>



<div><br />



</div>



<div><strong>The next step: France, Germany, or the USA</strong>



</div>



<div>Following Mayo Clinic’s recommendation, we contacted the C<strong>edars-Sinai Medical Center in Los Angeles</strong>, which has a neurosurgery department specifically <strong>dedicated to treating spinal CSF leaks and complex meningoceles</strong>, with a <strong>multidisciplinary team.</strong>



</div>



<div><br />



</div>



<div>We are also in contact with the<strong> CHU de Montpellier (France) and the Universitätsklinikum Freiburg (Germany), privately as well, </strong>in an effort to reduce costs.



</div>



<div><br />



</div>



<div>All of these centers are listed in the<strong> <a href="https://spinalcsfleak.org/directory/" target="_blank" rel="noreferrer noopener">Spinal CSF Leak directory</a> </strong>as reference facilities for treating my condition. As you can see by checking it, <strong>the situation in Italy is dramatic: there is no available center</strong>, and patients are advised to seek care in France, Germany, and then in other non‑European countries. This is why I am forced to pursue treatment abroad.



</div>



<div><br />



</div>



<div>Regardless of where I go, <strong>the costs will be extremely high</strong>. Even now, in <strong>Italy</strong>,<strong> I am already forced to cover additional expenses, as I need paid external support for language and medical coordination</strong>—my clinical condition no longer allows me to manage these things on my own.



</div>



<div><br />



</div>



<div>The situation has become unsustainable. I depend entirely on the <strong>financial help of my family</strong>; without them, I would not have been able to continue. But their resources are also <strong>running out quickly.</strong>



</div>



<div><br />



</div>



<div>But bureaucracy takes time. My condition is worsening. And the risk of permanent neurological damage is real.



</div>



<div><br />



</div>



<div><strong>How your contribution will help</strong>



</div>



<div>The total cost is still uncertain. As an initial goal—enough to cover the first essential expenses—I am hoping to raise <strong>€75,000 </strong>to cover:



</div>



<div>• Neurosurgical evaluation and treatment



</div>



<div>• Flights, accommodation, and stay at the clinical center for me and a caregiver



</div>



<div>• Medical and linguistic coordination support



</div>



<div><br />



</div>



<div><strong>Who I’m reaching out to</strong>



</div>



<div>To <strong>anyone </strong>reading this: people willing to help, even with a small gesture; <strong>doctors or specialists</strong> in spinal neurosurgery, CSF leaks, or dura mater disorders who may offer advice or contacts; <strong>foundations and associations </strong>supporting patients with rare conditions; anyone who can <strong>share this story </strong>and help it reach those who can truly make a difference.



</div>



<div>Every euro, every share, every medical contact matters.



</div>



<div>“And every signature counts! You can find my petition on Change.org: <a href="https://c.org/gXssFh7GBp" target="_blank" rel="noreferrer noopener">CLICK HERE!</a>



</div>



<div><br />



</div>



<div><strong>I’m asking for just one chance </strong>



</div>



<div>I was a competitive swimmer. I underwent two surgeries as a child and three more in less than two years. I’ve lived through eight years of pain without ever stopping my search for a solution.



</div>



<div><strong>I haven’t given up. </strong>



</div>



<div><strong>Please help me make sure I don’t have to now. </strong>



</div>



<div>Thank you.



</div>



<div><br />



</div>



<div>Ilaria



</div>

Anonymous

FABIO RAVANELLI

Lida Rugafiori

Pippo Caruso

Giorgio Bugliesi

Stefano Esposito

Luciana Bacigalupi

Ida Wegter

Patrizia Di Lenardo

TIZIANA CALERI

Elisabetta Benassi

Maria Pia Bacchi

ALESSANDRO MINOTTO

Barbara Stefania Elli

Aiuta Ilaria: 8 anni di lotta contro un meningocele spinale

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; 

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

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

currencyCode

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

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

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

Users Receiving Braze KYC Validation Failed

Native 11.3.0 and above

Influencer - Prod

US fundraisers and US users

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

isCampaignOwner

fundHasInstagramDeepLink

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

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

userCurrencyCode

Localized Currency

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

Aiuta Ilaria: 8 anni di lotta contro un meningocele spinale

Still €56,405 to go. Help us build momentum.