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<div>*** english version below ***
</div>
<div><br />
</div>
<div>Vor gerade einmal drei Wochen hat sich unser Leben von einem Moment auf den anderen verändert. <strong>Die Diagnose: MPS IIIA (Sanfilippo).</strong>
</div>
<div>Ein Satz, der alles stillstehen ließ. Ein Satz, der eine Welt erschütterte – meine Welt und die meines Sohnes Charlie.
</div>
<div><br />
</div>
<div>Charlie ist erst drei Jahre alt. Ein Alter, in dem Kinder normalerweise voller Neugier die Welt entdecken, in Pfützen springen, neue Worte lernen und uns täglich mit ihrer unbändigen Lebensfreude überraschen.
</div>
<div><br />
</div>
<div>Doch mit der Diagnose kam auch die Angst, dass genau diese Momente in naher Zukunft verschwinden könnten. MPS IIIA ist eine seltene, neurodegenerative Stoffwechselerkrankung, bei der Kinder oft schon im jungen Alter beginnen, sich rückzuentwickeln. Fähigkeiten, die sie mühsam – und langsamer als gesunde Kinder – erlernt haben: <strong>Sprechen, Laufen, Spielen.</strong> All das geht nach und nach verloren. Die Vorstellung, dass auch Charlie diesen Weg gehen wird, zerreißt mir als Mutter das Herz.
</div>
<div><br />
</div>
<div><strong>Aber es gibt einen Hoffnungsschimmer.</strong>
</div>
<div>In den USA wird derzeit eine <strong>Gentherapie </strong>entwickelt (UX111), die voraussichtlich 2026 auf den Markt kommen soll. Sie könnte den <strong>Krankheitsverlauf deutlich verlangsamen</strong> und Kindern mit MPS IIIA wertvolle Zeit schenken. Zeit zum Lachen. Zeit zum Lernen. Zeit zum Leben.
</div>
<div><br />
</div>
<div>Offizielle Informationen zu Kosten, Zugang oder genauen Zeitplänen gibt es noch nicht – aber eines wissen wir sicher: <strong>Zeit ist entscheidend.</strong> Jede Verzögerung kann bedeuten, dass Fähigkeiten verloren gehen, die nie wieder zurückkommen. Ein schneller Zugang zur Therapie ist so wichtig, weil Charlies Krankheit sich schubweise entwickelt und bereits geschädigte Zellen nicht wiederhergestellt werden können.
</div>
<div><br />
</div>
<div>Darum wollen wir vorbereitet sein – damit Charlie die Therapie dort bekommen kann, wo sie als erstes verfügbar sein wird.
</div>
<div><br />
</div>
<div><strong>Doch die Kosten sind enorm:</strong>
</div>
<div>Gentherapien gehören zu den teuersten medizinischen Behandlungen der Welt. Die Therapie selbst, medizinische Untersuchungen, Transporte, Aufenthalte, Nachsorge und zusätzliche Fördermaßnahmen ergeben Summen, die ich als alleinerziehende Mutter trotz einer wunderbaren Familie im Rücken niemals allein stemmen könnte.
</div>
<div>Doch ich werde alles tun, um meinem Charlie eine Chance zu geben. Eine Chance auf Zukunft, eine Chance darauf, nicht tatenlos zusehen zu müssen, wie ihm das Leben entgleitet.
</div>
<div>Ich werde versuchen, jede mögliche Unterstützung zu bekommen – auch über Kredite und Fördermittel. 
</div>
<div><br />
</div>
<div><strong>Was passiert, wenn es früher eine Behandlungsmöglichkeit in Europa gibt?</strong>
</div>
<div>Sollte sich rechtzeitig eine Behandlungsmöglichkeit in Europa ergeben, bleibt jeder benötigte Euro bei Charlie: für dringend benötigte Therapien, Hilfsmittel, medizinische Unterstützung. Alle darüberhinausgehenden Mittel gehen an die Forschung zu MPS IIIA, damit auch andere Kinder mit dieser Diagnose eine Chance bekommen.
</div>
<div><br />
</div>
<div><strong>Eure Hilfe ist gefragt.</strong>
</div>
<div>Jeder Beitrag, jede Weiterempfehlung, jedes Teilen dieses Aufrufs kann den Unterschied machen. Gemeinsam können wir schaffen, was allein unmöglich wäre.
</div>
<div><br />
</div>
<div><strong>Bitte helft mir, seine Welt nicht kleiner werden zu lassen.</strong>
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<div><br />
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<div>Jeder Euro bringt uns dieser Chance ein Stück näher.
</div>
<div><br />
</div>
<div>Von Herzen
</div>
<div>Astrid Reuther &amp; Familie
</div>
<div><br />
</div>
<div>*********
</div>
<div><br />
</div>
<div>Just three weeks ago, our lives changed from one moment to the next. <strong>The diagnosis: MPS IIIA (Sanfilippo).</strong>
</div>
<div>A single sentence that made everything stop. A sentence that shook an entire world – my world and that of my son, Charlie.
</div>
<div><br />
</div>
<div>Charlie is only three years old. An age when children usually explore the world with endless curiosity, jump in puddles, learn new words, and surprise us every day with their joy and energy.
</div>
<div><br />
</div>
<div>But with this diagnosis came the fear that these moments could soon disappear.
</div>
<div>MPS IIIA is a rare, neurodegenerative metabolic disorder in which children often begin to regress at a very young age. Skills they worked so hard to learn – and learned more slowly than healthy children – like speaking, walking, and playing, gradually fade away.
</div>
<div>The thought that Charlie might face this path breaks my heart as a mother.
</div>
<div><br />
</div>
<div><strong>But there is a glimmer of hope.</strong>
</div>
<div>In the United States, a <strong>gene therapy (UX111)</strong> is currently being developed and is expected to reach the market in 2026. It could significantly slow the progression of the disease and give children with MPS IIIA something priceless: time. Time to laugh. Time to learn. Time to live.
</div>
<div><br />
</div>
<div>Official information about costs, access, and exact timelines is not yet available – but one thing is certain: <strong>time is critical.</strong> Every delay can mean losing abilities that will never return. Quick access to treatment is essential because Charlie’s disease progresses in phases, and cells that are already damaged cannot be restored.
</div>
<div><br />
</div>
<div>This is why we want to be prepared – so that Charlie can receive the therapy wherever it becomes available first.
</div>
<div><br />
</div>
<div><strong>But the costs are enormous.</strong>
</div>
<div>Gene therapies are among the most expensive medical treatments in the world.
</div>
<div>The therapy itself, medical evaluations, travel, stays abroad, follow-up care, and additional supportive therapies amount to a sum that I, as a single mother – even with a wonderful family behind me – could never manage alone.
</div>
<div><br />
</div>
<div>Still, I will do everything in my power to give my Charlie a chance.
</div>
<div>A chance for a future.
</div>
<div>A chance not to stand by helplessly while life slowly slips away from him.
</div>
<div><br />
</div>
<div>I will pursue every possible form of support – including loans and grant programs.
</div>
<div><br />
</div>
<div><strong>What happens if a treatment option becomes available in Europe earlier?</strong>
</div>
<div>If an opportunity arises in time, every needed euro will still go directly to Charlie: for essential therapies, equipment, and medical support. Any remaining funds will be donated to MPS IIIA research, so that other children facing this diagnosis may also have a chance.
</div>
<div><br />
</div>
<div><strong>We need your help.</strong>
</div>
<div>Every donation, every share, every recommendation can make a difference.
</div>
<div>Together, we can achieve what would be impossible alone.
</div>
<div><br />
</div>
<div><strong>Please help me keep his world from becoming smaller.</strong>
</div>
<div>Every euro brings us one step closer to this chance.
</div>
<div><br />
</div>
<div>With all my heart,
</div>
<div>Astrid Reuther &amp; Family
</div>

Gemeinsam für ein Kinderleben - Charlie (3) hat MPS III A

Hope

<div>It is with profound sadness that we share the loss of Eric Dane after a hard-fought battle with ALS, leaving behind his devoted wife, Rebecca, and his two teenage daughters, Billie and Georgia, who were the center of his world.


</div>


<div><br />


</div>


<div>Following his diagnosis, Eric became a passionate spokesperson for the ALS community, using his voice and platform to advocate for fellow patients and to push for greater awareness. Even as his own health declined, he remained deeply committed to helping others facing the same devastating disease. As his illness progressed far more quickly than anyone could have imagined, Eric's friends have come together to create this GoFundMe to support his girls and their future needs. 


</div>


<div><br />


</div>


<div>Any contribution, no matter the size, will help provide stability during this incredibly difficult time and in the future for Eric’s wonderful daughters.


</div>


<div>Thank you. 


</div>

In Honor of Eric Dane

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In Honor of Eric Dane

Gemeinsam für ein Kinderleben - Charlie (3) hat MPS III A