<div><strong>„Sie müssen sich verabschieden.“</strong> (english Version see below)
</div>
<div><br />
</div>
<div>Diesen Satz hörte meine Mama nicht nur einmal.
</div>
<div>Ich war wenige Monate alt, als mein Herz zum ersten Mal operiert werden musste. Niemand wusste damals, dass dies erst der Anfang sein würde.
</div>
<div>Heute bin ich 21 Jahre alt.
</div>
<div>Und ich lebe immer noch.
</div>
<div>Entgegen allen Prognosen.
</div>
<div>Entgegen Wahrscheinlichkeiten.
</div>
<div>Entgegen vieler Abschiede, die man meiner Mama nahegelegt hat.
</div>
<div><br />
</div>
<div><strong>Mein Name ist Iolani Blouin.</strong>
</div>
<div>Und ich lebe mit dem Myhre-Syndrom – einer extrem seltenen genetischen Erkrankung. Weltweit sind rund 200 Fälle bekannt. In der Schweiz bin ich die einzige diagnostizierte Person. Jedes Jahr verlieren wir Betroffene aus unserer weltweiten Gruppe an die tödliche Krankheit.
</div>
<div><br />
</div>
<div>Aber ich bin mehr als ein medizinischer Sonderfall.
</div>
<div>Ich bin eine junge Frau mit Humor.
</div>
<div>Ich liebe Musik.
</div>
<div>Ich freue mich über kleine Ausflüge mit Freunden und Familie.
</div>
<div>Ich geniesse Momente, die sich leicht anfühlen.
</div>
<div>Und…
</div>
<div>…ich kämpfe – jeden Tag aufs Neue.
</div>
<div><br />
</div>
<div><strong>Ein Leben zwischen Intensivstation und Hoffnung</strong>
</div>
<div><br />
</div>
<div>Meine Geschichte ist geprägt von:
</div>
<ul>
<li>7 Operationen am offenen Herzen
</li>
<li>einen dreiminütigen Herzstillstand
</li>
<li>eine Spenderherzklappe
</li>
<li>schwere Komplikationen mit Seh-, Sprach- und Bewegungsstörungen
</li>
<li>mehrfach operierten Magen-Darm-Trakt
</li>
<li>schwer eingeschränkter Lungenfunktion (nur noch ca. 20–25 %) und starke Atembeschwerden
</li>
<li>zunehmende Versteifung von Gelenken und Brustkorb
</li>
<li>Autismus
</li>
<li>Hör- und Sehbeeinträchtigungen
</li>
<li>Essstörung
</li>
<li>und heute: ein palliatives Stadium
</li>
</ul>
<div><br />
</div>
<div>Das Myhre-Syndrom wird durch eine Mutation im SMAD4-Gen verursacht. Es führt zu fortschreitender Vernarbung (Fibrosierung) des Bindegewebes. Da der menschliche Körper zu einem grossen Teil aus Bindegewebe besteht, sind nahezu alle Organe wie Herz, Lunge, Gefässe, Magen-Darm-Trakt, Atemwege etc. betroffen.
</div>
<div>Es gibt keine heilende Therapie. Es werden ausschliesslich Symptome behandelt.
</div>
<div><br />
</div>
<div>Jede Stabilität ist fragil.
</div>
<div>Jede Infektion ist sofort kritisch und allenfalls lebensbedrohlich.
</div>
<div>Jede Veränderung verlangt sofortige medizinische Reaktion.
</div>
<div><br />
</div>
<div><strong>Meine Mama – mein sicherer Hafen</strong>
</div>
<div><br />
</div>
<div>Während Ärzte wechselten, Prognosen gestellt wurden und Systeme an Grenzen stiessen, blieb eine Konstante:
</div>
<div>Meine Mama - Sie hält alles zusammen und heisst Madeleine.
</div>
<div>Sie koordiniert über 12 medizinische Fachrichtungen.
</div>
<div>Sie organisiert Assistenz, Geräte, Therapien.
</div>
<div>Sie führt juristische Auseinandersetzungen, weil meine Erkrankung in der Schweiz keine eigene IV-Nummer hat.
</div>
<div>Sie trägt die Verantwortung – 24 Stunden am Tag und arbeitet gleichzeitig Teilzeit, um unsere Existenz zu sichern.
</div>
<div>Und sie kämpft leise weiter, auch wenn niemand hinschaut.
</div>
<div>Ohne sie wäre ich heute nicht mehr hier.
</div>
<div><br />
</div>
<div><strong>Unsere Realität</strong>
</div>
<div><br />
</div>
<div>Ich bin auf Sauerstoff angewiesen.
</div>
<div>Auf ein Beatmungsgerät.
</div>
<div>Auf Medikamente und medizinische Überwachung
</div>
<div>Auf einen Rollstuhl.
</div>
<div>Auf permanente Begleitung.
</div>
<div>Reisen sind nur mit aufwendiger medizinischer Vorbereitung möglich.
</div>
<div>Fliegen ist ausgeschlossen.
</div>
<div>Zeit ist kein selbstverständliches Gut.
</div>
<div><br />
</div>
<div><strong>Ich befinde mich im palliativen Stadium</strong>
</div>
<div><br />
</div>
<div>Das bedeutet:
</div>
<div>Meine Erkrankung ist fortschreitend.
</div>
<div>Unheilbar.
</div>
<div>Und lebensverkürzend.
</div>
<div>Aber es bedeutet nicht, dass mein Leben aufgehört hat.
</div>
<div>Ich lebe.
</div>
<div>Ich fühle.
</div>
<div>Ich freue mich und ich bin hier – entgegen vielen Prognosen.
</div>
<div>Und genau deshalb zählt jeder Tag.
</div>
<div><br />
</div>
<div><strong>Jährlich anfallende Kosten - 45’000 CHF – und warum wir sammeln</strong>
</div>
<div><br />
</div>
<div>Als einziger bekannter Fall in der Schweiz gibt es keine standardisierten Strukturen. Vieles wird nicht oder nur teilweise übernommen. Vieles muss individuell erkämpft werden.
</div>
<div>Ihre Unterstützung hilft konkret:
</div>
<ul>
<li>die 24-Stunden-Betreuung sicherzustellen
</li>
<li>spezialisierte Therapien zu finanzieren
</li>
<li>lebensnotwendige Geräte zu warten und zu ersetzen
</li>
<li>Assistenz zur Entlastung meiner Mutter zu ermöglichen
</li>
<li>rechtliche Schritte zur Sicherung berechtigter Leistungen zu tragen
</li>
<li>nicht gedeckte medizinische Kosten zu übernehmen
</li>
<li>und meine Lebensqualität im palliativen Alltag zu verbessern
</li>
</ul>
<div><br />
</div>
<div>Es geht nicht nur um medizinisches Überleben.
</div>
<div>Es geht um Würde.
</div>
<div>Um Selbstbestimmung
</div>
<div>Um Sicherheit und Stabilität
</div>
<div>Und um Momente sowie Erinnerungen, die bleiben.
</div>
<div><br />
</div>
<div><strong>Leben verschönern – trotz allem</strong>
</div>
<div><br />
</div>
<div>Wenn Heilung keine Option ist, wird Lebensqualität zur wichtigsten Medizin.
</div>
<div>Für mich und Mama bedeutet das:
</div>
<ul>
<li>kleine Reisen, solange sie möglich sind
</li>
<li>gemeinsame Erlebnisse mit Familie und Freunden
</li>
<li>besondere Momente ausserhalb von Spitalräumen
</li>
<li>ein Konzert, ein Ausflug, ein Wochenende am See
</li>
<li>ein Stück Normalität in einer aussergewöhnlichen Situation
</li>
</ul>
<div><br />
</div>
<div>Es sind diese Augenblicke, die Kraft schenken.
</div>
<div>Die Erinnerungen schaffen.
</div>
<div>Die das Herz füllen.
</div>
<div><br />
</div>
<div>Die Medizin verlängert meine Zeit.
</div>
<div>Freude füllt sie mit Leben.
</div>
<div><br />
</div>
<div><br />
</div>
<div>Ihre Spende ist mehr als Geld, sie ermöglicht genau diese Momente.
</div>
<div>Sie helfen, dass nicht nur Krankheit meinen Alltag bestimmt, sondern auch Lachen, Leichtigkeit und gemeinsame Erlebnisse.
</div>
<div><strong>Sie schenken mir nicht nur Unterstützung.</strong>
</div>
<div><strong>Sie schenken mir Erinnerungen.</strong>
</div>
<div><strong>Sie schenken mir Lebensqualität.</strong>
</div>
<div><strong>Sie schenken mir Freude.</strong>
</div>
<div>Und setzten ein Zeichen, dass ich und meine Mama diesen Weg nicht allein gehen müssen.
</div>
<div>Dass auch seltene Schicksale gesehen werden.
</div>
<div>Ein Zeichen, dass Hoffnung Handlung wird.
</div>
<div><br />
</div>
<div>Und genau das macht den Unterschied.
</div>
<div><br />
</div>
<div>Heute.
</div>
<div>Direkt.
</div>
<div>Spürbar.
</div>
<div><br />
</div>
<div>Von Herzen sage ich danke.
</div>
<div>Iolani &amp; Mama Madeleine
</div>
<div><br />
</div>
<div><strong>Links:</strong>
</div>
<div><a href="https://www.tagblatt.ch/leben/gesundheit/iolanis-odyssee-14-jahre-bis-zur-diagnose-der-seltenen-erbkrankheit-ld.1335699?utm_source=ig&amp;utm_medium=social&amp;utm_content=link_in_bio&amp;fbclid=PAb21jcAQRRxZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafzLUiTkWcITTapHVwiv26aK6iCfj0BZxUuGyBDlB15D_IHAn9HNA1BDbuaPQ_aem_gJiXjDpm580eXCp1WnFUVQ" target="_blank" rel="noreferrer noopener">Iolanis Odyssee</a>
</div>
<div><a href="https://www.instagram.com/lifewithmyhre?igsh=MTRnMzY5bGZzbnBoYg==" target="_blank" rel="noreferrer noopener">lifewithmyhre</a>
</div>
<div><a href="https://www.myhresyndrome.org/" target="_blank" rel="noreferrer noopener">Myhre Syndrom Foundation</a>
</div>
<div><br />
</div>
<div>____________________________________________________
</div>
<div><br />
</div>
<div><strong>“You have to say goodbye.”</strong>
</div>
<div><br />
</div>
<div>My mum did not hear that sentence just once.
</div>
<div>I was only a few months old when I had to undergo the very first open-heart surgery. Back then, no one knew that this would only be the beginning.
</div>
<div>Today I am 21 years old.
</div>
<div>And I am still alive.
</div>
<div>Against all predictions.
</div>
<div>Against all probabilities.
</div>
<div>Against the many goodbyes my mum was urged to prepare for.
</div>
<div><br />
</div>
<div><strong>My name is Iolani Blouin.</strong>
</div>
<div>And I live with Myhre syndrome – an extremely rare genetic disorder. Only around 200 cases are known worldwide. In Switzerland, I am the only diagnosed person. Every year, we lose members of our global community to this life-threatening disease.
</div>
<div><br />
</div>
<div>But I am more than a medical rarity.
</div>
<div>I am a young woman with a sense of humor.
</div>
<div>I love music.
</div>
<div>I treasure small outings with friends and family.
</div>
<div>I cherish moments that feel light.
</div>
<div>And…
</div>
<div>…I fight – every single day.
</div>
<div><br />
</div>
<div><strong>A life between intensive care and hope</strong>
</div>
<div><br />
</div>
<div>My story is shaped by:
</div>
<ul>
<li>7 open-heart surgeries
</li>
<li>three minutes of cardiac arrest
</li>
<li>a donor heart valve
</li>
<li>severe complications affecting vision, speech and mobility
</li>
<li>multiple gastrointestinal surgeries
</li>
<li>severely restricted lung function (only approx. 20–25%) and significant breathing difficulties
</li>
<li>progressive stiffening of joints and rib cage
</li>
<li>autism
</li>
<li>hearing and visual impairments
</li>
<li>an eating disorder
</li>
<li>and today: a palliative stage
</li>
</ul>
<div><br />
</div>
<div>Myhre syndrome is caused by a mutation in the SMAD4 gene. It leads to progressive scarring (fibrosis) of connective tissue. Because the human body largely consists of connective tissue, nearly all organs are affected – including the heart, lungs, blood vessels, gastrointestinal tract, airways and much more.
</div>
<div>There is no curative therapy. Only symptoms can be treated.
</div>
<div>Every period of stability is fragile.
</div>
<div>Every infection becomes not only critical immediately – but potentially life-threatening.
</div>
<div>Every change requires an immediate medical response.
</div>
<div><br />
</div>
<div><strong>My mum – my safe harbor</strong>
</div>
<div><br />
</div>
<div>While doctors changed, prognoses were made and systems reached their limits, one constant remained:
</div>
<div>My mum. Her name is Madeleine. She holds everything together.
</div>
<div>She coordinates more than 12 medical specialties.
</div>
<div>She organizes assistance, equipment and therapies.
</div>
<div>She engages in legal battles because my condition has no dedicated disability insurance classification in Switzerland.
</div>
<div>She carries responsibility – 24 hours a day – while working part-time to secure our livelihood.
</div>
<div>And she keeps fighting quietly, even when no one is watching.
</div>
<div>Without her, I would not be here today.
</div>
<div><br />
</div>
<div><strong>Our reality</strong>
</div>
<div><br />
</div>
<div>I depend on oxygen.
</div>
<div>On a ventilator.
</div>
<div>On medication and constant medical monitoring.
</div>
<div>On a wheelchair.
</div>
<div>On continuous support.
</div>
<div>Travel is only possible with extensive medical preparation.
</div>
<div>Flying is not possible anymore.
</div>
<div>Time is not something we take for granted.
</div>
<div><br />
</div>
<div><strong>I am in a palliative stage.</strong>
</div>
<div><br />
</div>
<div>That means:
</div>
<div>My condition is progressive.
</div>
<div>Incurable.
</div>
<div>Life-limiting.
</div>
<div>But it does not mean my life has ended yet.
</div>
<div>I live.
</div>
<div>I feel.
</div>
<div>I experience joy.
</div>
<div>And I am here – against many predictions.
</div>
<div>And that is exactly why every single day matters.
</div>
<div><br />
</div>
<div><strong>Annual costs – CHF 45,000 – and why we are fundraising</strong>
</div>
<div><br />
</div>
<div>As the only known case in Switzerland, there are no standardized structures. Many things are not covered, or only partially covered. Much must be fought for individually.
</div>
<div>Your support makes a direct difference:
</div>
<ul>
<li>ensuring 24-hour care
</li>
<li>financing specialized therapies
</li>
<li>maintaining and replacing life-sustaining equipment
</li>
<li>enabling assistance to support my mother
</li>
<li>covering legal steps to secure rightful benefits
</li>
<li>covering uncovered medical expenses
</li>
<li>improving my quality of life in everyday palliative care
</li>
</ul>
<div><br />
</div>
<div>This is not only about medical survival.
</div>
<div>It is about dignity.
</div>
<div>About self-determination.
</div>
<div>About safety and stability.
</div>
<div>And about moments and memories that are made to remain.
</div>
<div><br />
</div>
<div><strong>Making life beautiful – despite everything</strong>
</div>
<div><br />
</div>
<div>When healing is no longer an option, quality of life becomes the most important medicine.
</div>
<div>For my mum and me, that means:
</div>
<ul>
<li>small trips, as long as they are still possible
</li>
<li>shared experiences with family and friends
</li>
<li>special moments outside hospital walls
</li>
<li>a concert, an outing, a weekend by the lake and more…
</li>
<li>simply a piece of normality in an extraordinary situation
</li>
</ul>
<div><br />
</div>
<div>These are the moments that give strength.
</div>
<div>That create memories.
</div>
<div>That fill the heart.
</div>
<div><br />
</div>
<div>Medicine extends my time.
</div>
<div>Joy fills it with life.
</div>
<div><br />
</div>
<div>Your donation is more than financial support – it makes these moments possible.
</div>
<div>You help ensure that my days are not defined by illness only, but also by laughter, lightness and shared experiences.
</div>
<div><strong>You are not only offering me support.</strong>
</div>
<div><strong>You are giving me memories.</strong>
</div>
<div><strong>You are giving me quality of life.</strong>
</div>
<div><strong>You are giving me joy.</strong>
</div>
<div>And you are sending a powerful message – that my mum and I do not have to walk this path alone.
</div>
<div>That rare lives are seen.
</div>
<div>That hope becomes action.
</div>
<div><br />
</div>
<div>And that makes all the difference.
</div>
<div><br />
</div>
<div>Today.
</div>
<div>Immediately.
</div>
<div>Deeply felt.
</div>
<div><br />
</div>
<div>From the bottom of my heart, thank you.
</div>
<div>Iolani &amp; Mama Madeleine
</div>
<div><br />
</div>
<div><strong>Links:</strong>
</div>
<div><a href="https://www.instagram.com/lifewithmyhre?igsh=MTRnMzY5bGZzbnBoYg==" target="_blank" rel="noreferrer noopener">lifewithmyhre</a>
</div>
<div><a href="https://www.myhresyndrome.org/" target="_blank" rel="noreferrer noopener">Myhre Syndrom Foundation</a>
</div>

Anonymous

Stephanie Chamberlin

Caroline Trenkle-von Bertrab

Stephan Brode

Gérard Bachmann

Christian Anderegg

Matthias und Andrea Schönholzer

Jakub Slezák

Thierry Wilhelm

Claudia Bosshardt

Anja Herrmann

Angelika Schuler

lifewithmyhre

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

be_supporter_comments_enabled_supported_funds

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

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

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

Just CHF705CHF to go! Make an impact.

lifewithmyhre

Just CHF705 to go!
Make an impact.