<div>The English version can be found below. Please scroll down<br />

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<div><span>Hallo ihr Lieben,</span><br />

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<div>​heute wende ich mich mit einer Herzensangelegenheit an euch, die uns und vor allem den Eltern von Lara den Boden unter den Füßen weggezogen hat. Es geht um mein Patenkind Lara. Sie lebt mit ihrer Familie bei Wangen im Allgäu.


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<div>​Lara ist ein absoluter Sonnenschein. Sie ist hilfsbereit, lieb und steckt jeden mit ihrem Lächeln an. Doch hinter diesem Strahlen verbirgt sich ein unsichtbarer Gegner: Sanfilippo Typ C (MPS IIIC).


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<div>​Was bedeutet das?


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<div>Sanfilippo wird oft als „kindliche Demenz“ bezeichnet. Ein seltener Gendefekt sorgt dafür, dass ihr Körper bestimmte Stoffe im Gehirn nicht abbauen kann. Diese lagern sich ab und zerstören nach und nach die Gehirnzellen.


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<div>​Warum wir jetzt handeln müssen:


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<div>Das Schlimmste ist die Ungewissheit. Weil die Krankheit so extrem selten ist, wissen wir noch nicht, wie schnell ihr Gehirn abbaut. Wir wissen nur: Jeder Tag zählt. Es ist ein Wettlauf gegen die Zeit – auch für ihre zwei Geschwister. Wir setzen alles daran, dass sie noch unzählige gemeinsame Momente erleben dürfen, ohne dass diese Krankheit sie voneinander trennt.


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<div>​Unsere Hoffnung: Die Forschung.


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<div>Es gibt weltweit vielversprechende Ansätze für Gentherapien, die diesen Prozess stoppen könnten. Doch weil die Fallzahlen so gering sind, fehlen oft die Gelder für den entscheidenden Durchbruch. Wir sammeln deshalb Spenden, die unter anderem an die Sanfilippo Initiative sowie direkt an ausgewählte internationale Forschungsprojekte fließen<br />
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<div>Die Sanfilippo Initiative <span>sorgt dafür, dass die Forschung für den seltenen Typ C nicht stillsteht und Kinder wie Lara eine Chance auf die lebensrettende Gentherapie erhalten.</span>
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<div>​Wie du helfen kannst:


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<li>​Spenden: Jeder Betrag, egal wie klein, fließt direkt in die Forschung.


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<li>​Teilen: Bitte teile diesen Beitrag: Reichweite ist unsere größte Chance, dieser seltenen Erkrankung die nötige Aufmerksamkeit zu verschaffen.


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<div>Wir wollen Laras Lächeln bewahren – für sie, für ihre Geschwister und für ihre Zukunft.


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<div>​Von Herzen Danke für eure Unterstützung!


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<div>Lisa Zapf und Familie Reichel/Ziegler


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<div>Ein kleiner Hinweis zu den Gebühren: Wer lieber direkt helfen möchte, um die Bearbeitungsgebühren der Plattform zu umgehen, kann uns seine Spende natürlich auch persönlich geben oder direkt überweisen. ​Damit jeder sehen kann, wie viel wir gemeinsam schon erreicht haben, tragen wir deinen Beitrag (auf Wunsch auch anonym) als 'Offline-Spende' in die Kampagne ein. 


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<div>Hello everyone, 

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<div>Today, I am reaching out to you regarding a matter close to my heart—one that has completely shaken our world, and especially that of Lara's parents. 

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<div>It concerns my godchild, Lara. She lives with her family near Wangen in the Allgäu region. 

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<div>Lara is an absolute ray of sunshine. She is helpful, sweet, and her smile is truly infectious. Yet, hidden behind this radiance lies an invisible adversary: Sanfilippo Syndrome Type C (MPS IIIC).<span> </span>

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<div><span>What does this mean?
Sanfilippo is often referred to as "childhood dementia." A rare genetic defect prevents her body from breaking down certain substances in the brain. These substances accumulate, gradually destroying brain cells. </span>

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<div><span>Why we must act now:
The worst part is the uncertainty. Because the disease is so extremely rare, we do not yet know how quickly her brain function will deteriorate. </span>

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<div><span>We know only this: Every day counts. It is a race against time—for her two siblings as well. We are doing everything in our power to ensure they can still share countless moments together before this disease tears them apart. </span>

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<div><span>Our hope: Research. </span>
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<div><span>There are promising gene therapy approaches worldwide that could halt this process. However, because patient numbers are so low, funding for the crucial breakthrough is often lacking. We are therefore raising donations that flow to the Sanfilippo Initiative as well as directly to selected international research projects.</span>
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<div><span>This organization ensures that research into the rare Type C continues to advance — giving children like Lara a chance at life-saving gene therapy. </span>
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<div><span>How you can help:</span>

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<li><span>Donate: Every contribution—no matter how small—goes directly toward research.   </span><br />

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<li><span>Share: Please share this post; reaching a wide audience is our greatest opportunity to bring this rare disease the attention it so desperately needs. </span><br />

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<div><span>We want to preserve Lara's smile—for her, for her siblings, and for her future. </span>

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<div><span>Heartfelt thanks for your support! </span>

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<div><span>Lisa Zapf and the Reichel/Ziegler Family </span>

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<div><span>A quick note regarding fees: If you would prefer to help directly—thereby avoiding the platform's processing fees—you are, of course, welcome to give us your donation in person or transfer it directly. So everyone can see what we've achieved together, we'll log your contribution as an "offline donation" — anonymously, if you prefer.</span>

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Verena Möller

Marco Haak

Anonymous

Grillwurst Stand Lumpifäscht 

Isabell Schindler

Grillfest Niederwangen Niederwangen 

Michelle Rehfeldt

Andrea Steiner

Alena Frühschütz

Sabine Rosenbecker

Forschung ist Hoffnung für Lara

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Forschung ist Hoffnung für Lara

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