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 Liebe Unterstützerinnen und Unterstützer,
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 wir bitten euch von Herzen um Hilfe für eine fünfköpfige Familie und ihren kleinen Sohn <strong>Raphael</strong>, der erst 15 Monate alt ist und bereits den größten Kampf seines Lebens führen muss.
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 Raphael leidet an dem äußerst <strong>seltenen</strong> und schweren <strong>Menkes-Syndrom</strong>.
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 Aufgrund eines angeborenen Gendefekts kann sein Körper das lebenswichtige Spurenelement Kupfer nicht richtig verwerten. Dies führt zu schwerwiegenden Entwicklungsstörungen und neurologischen Beeinträchtigungen und macht eine intensive medizinische Betreuung notwendig.
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 Seit der Diagnose hat sich das Leben seiner Familie grundlegend verändert. Arzttermine, Krankenhausaufenthalte, Therapien, Fördermaßnahmen und die tägliche Pflege bestimmen den Alltag. Jede Woche bringt neue Herausforderungen mit sich, die nicht nur körperlich und emotional, sondern auch finanziell eine enorme Belastung darstellen.
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 Trotz aller Schwierigkeiten gibt es Hoffnung.
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 Dank der Unterstützung der <strong>Menkes International Association </strong>erhält Raphael seit dem 20.08.2026 eine in Deutschland erstmals verfügbare Therapie mit Elesclomol-Kupfer. Die Behandlung besteht aus wöchentlichen Injektionen sowie täglichen Gaben von Kupferhistidin. Für Raphael und seine Familie bedeutet diese neue Therapie die Hoffnung auf Fortschritte in seiner motorischen und kognitiven Entwicklung und auf eine bessere Zukunft.
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 Seine Eltern setzen jeden Tag alles daran, ihrem jüngsten Sohn die bestmögliche Förderung, Therapie und Versorgung zu ermöglichen. Gleichzeitig möchten sie auch für ihre beiden älteren Söhne im Alter von 9 und 12 Jahren da sein und ihnen trotz der schwierigen Situation eine liebevolle und möglichst unbeschwerte Kindheit schenken. Doch die ständigen Belastungen bringen die Familie zunehmend an ihre Grenzen.
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 Um Raphael bestmöglich fördern und versorgen zu können, stehen jetzt wichtige Anschaffungen und notwendige Umbaumaßnahmen an:
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 <li>Ein <strong>E-Bike mit speziellem Anhänger</strong>, damit Arzt- und Therapietermine sicherer, einfacher und flexibler wahrgenommen werden können</li>
 <li>Der <strong>Umbau des Badezimmers</strong> zu einem barrierefreien und behindertengerechten Bad, um Raphaels Versorgung im Alltag zu erleichtern.</li>
 <li><strong>Renovierung eines bewohnbaren Zuhauses</strong>: Durch zahlreiche Krankenhausaufenthalte und die bislang fehlende Unterstützung eines Pflegedienstes mussten dringend notwendige Renovierungsarbeiten immer wieder verschoben werden. Da die Familie die Arbeiten aus finanziellen Gründen größtenteils selbst durchführen muss, verzögert sich die Fertigstellung erheblich. Das Haus ist aktuell nicht bewohnbar, wodurch zusätzlich zur Kreditrate auch Mietkosten anfallen. Die Spendengelder helfen dabei, Materialkosten zu decken und notwendige Arbeiten schneller abzuschließen, damit die Familie endlich in ihr eigenes Zuhause ziehen kann.</li>
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 Jede Spende, unabhängig von ihrer Höhe, hilft dieser Familie dabei, ihren Alltag zu bewältigen und Raphael die bestmöglichen Chancen für seine Entwicklung zu geben.
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 Auch wenn ihr nicht spenden könnt, ist das Teilen dieses Aufrufs eine wertvolle Unterstützung.
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 Gerade jetzt befindet sich Raphael in einer entscheidenden Entwicklungsphase. Jede zusätzliche Förderung, jede Therapie und jede Unterstützung kann einen wichtigen Unterschied für seine Zukunft und Lebensqualität machen.
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 Lasst uns gemeinsam zeigen, dass niemand diesen Weg allein gehen muss.
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 ❤️ Jede Spende zählt.
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 Jede Unterstützung macht einen Unterschied. Jeder geteilte Beitrag schenkt neue Hoffnung.
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 ❤️ Von Herzen danke für jede Unterstützung.
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 <strong>Help Raphael and His Family Fight Menkes Syndrome</strong>
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 Dear friends &amp; supporters,
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 We are reaching out with a heartfelt plea for support for a family of five and their little son, Raphael, who is only 15 months old and already facing the greatest challenge of his young life.
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 Raphael has been diagnosed with <strong>Menkes syndrome</strong>,<strong> an extremely rare and severe genetic disorder.</strong> Due to an inherited genetic defect, his body is unable to process and utilise copper, an essential trace element that is vital for healthy growth and development. As a result, Raphael faces significant developmental delays and neurological impairments, requiring intensive medical care and ongoing treatment.
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 Since receiving the diagnosis, life for Raphael's family has changed completely. Medical appointments, hospital stays, therapies, developmental support programmes, and daily care now shape their everyday lives. Every week brings new challenges that are not only physically and emotionally exhausting but also place a significant financial burden on the family.
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 Despite these difficulties, there is hope.
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 Thanks to the support of the <strong>Menkes International Association</strong>, Raphael has been receiving Elesclomol-Copper therapy since 20 August 2026, a treatment that has become available in Germany for the first time. The therapy consists of weekly injections alongside daily doses of copper histidine. For Raphael and his family, this innovative treatment represents hope for improvements in his motor and cognitive development and, ultimately, a brighter future.
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 Every day, Raphael's parents do everything they can to provide their youngest son with the best possible care, therapy, and support. At the same time, they want to continue being there for their two older sons, aged 9 and 12, giving them the loving and carefree childhood every child deserves despite the difficult circumstances.
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 However, the constant challenges and demands are increasingly pushing the family to their limits.
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 To give Raphael the best possible support and care, several important purchases and home adaptations are now urgently needed:
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 <li><strong>An e-bike with a specialised trailer,</strong> allowing Raphael to travel safely and comfortably to medical appointments and therapy sessions, while giving the family greater flexibility in their daily lives.</li>
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 <li><strong>A fully accessible and disability-friendly bathroom </strong>conversion, making Raphael's daily care easier and safer as his needs continue to grow.</li>
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 <li><strong>Renovating a Safe and Livable Home: </strong>Due to numerous hospital stays and a lack of support from a care service, urgently needed renovation work has had to be postponed time and time again. As the family is unable to afford professional contractors, they have been carrying out most of the work themselves, which has significantly delayed progress. The house is currently uninhabitable, forcing the family to cover both mortgage and rental costs at the same time. Donations will help cover the cost of building materials and enable essential work to be completed more quickly, allowing the family to finally move into their own home.</li>
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 Every donation, no matter the amount, will help this family manage their daily challenges and provide Raphael with the best possible opportunities for growth and development.
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 If you are unable to donate, sharing this fundraiser with your friends, family, and community would mean the world to them.
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 Right now, Raphael is at a crucial stage of his development. Every additional therapy, every piece of support, and every act of kindness has the potential to make a meaningful difference to his future and quality of life.
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 <strong>Let's show together that no family should have to face a journey like this alone.</strong>
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 ❤️ Every donation counts. Every act of support makes a difference. Every share brings new hope.
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 ❤️ Thank you from the bottom of our hearts for your kindness, compassion, and support. ❤️
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Ursula Sproß-Feld

Klaudia Burger

Robert Jažo

Phileas Scharnhorst

Christian Becker

Snur Sara Frank

Anonymous

Markus Caspari

Erik Pfalzgraf

Carina Zettler

Alex Bialek

Menkes-Syndrom: Gemeinsam Raphael und seiner Familie helfen

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Menkes-Syndrom: Gemeinsam Raphael und seiner Familie helfen

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