<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

Christian Anderegg

Matthias und Andrea Schönholzer

Jakub Slezák

Thierry Wilhelm

Claudia Bosshardt

Anja Herrmann

Angelika Schuler

Patric Kaeser

Mireille Kuhn

Johannes Greveling

lifewithmyhre

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lifewithmyhre

Still CHF1,385 to go. Help us build momentum.