Hilfe für Madeleine
Vielen Dank an alle unsere Spender, wir haben unser Ziel erreicht.
Ich heiße Madeleine, bin 4 Jahre jung und lebe in Oberösterreich.
Im Jänner 2019, kurz nach meinen 3. Geburtstag, erhielt ich die schreckliche Diagnose, von zwei extrem seltenen unheilbaren neurologischen Erkrankungen. Es handelt sich um eine Spätinfantile Metachromatische Leukodystrophie und um eine Charcot Marie Tooth Neuropathie. Durch einen Enzymmangel kommt es zu schweren Schädigungen und Zerstörung meiner Nervenzellen im Gehirn und meiner peripheren Nerven. Der Verlust all meiner bisherigen erlernten Funktionen wie Krabbeln, Essen, Sehen, Hören wird die Folge sein.
Die Kombinationen meiner Erkrankungen kommen bisher weltweit in keinen Datenbanken vor, daher gibt es für mich vorerst auch leider keine Therapie, und keine Heilung. Die Krankheit führt leider zum Tod.
Daheim konnten wir dank vieler Spenden mit dem behinderten gerechten Umbau unserer im 1. Stock befindlichen Wohnung beginnen, jetzt fehlt nur noch ein Treppenlift. Die Anschaffung kann bis zu 10.000€ kosten, daher benötigen wir dringend Unterstützung!
Ich benötige außerdem ein Kommunikations ipad der Firma lifetool. Dieses kann ich mit meinen Augen steuern und kann somit mit meiner Familie kommunizieren und besser am Leben teilnehmen als bisher! Die ersten Versuche waren sehr erfolgreich.
Jetzt ist es nur eine Geldfrage denn ohne Sponsoren können wir uns dieses teure Hilfsmittel leider nicht leisten. Ein solches augengesteuertes Gerät kostet nämlich gut 17.000€Daher bitte ich Sie heute um Ihre Unterstützung!
Von Herzen Danke!!
eure Madeleine
Die Familie benötigt finanzielle Unterstützung um alle nötigen Hilfsmittel anzuschaffen.
In Österreich werden Hilfsmittel und Treppenlifte teilweise finanziert, aber dennoch ist mit großen Selbstbehalten zu rechnen.
Wenn du kannst, gib eine Kleinigkeit für Madeleine und ihre Familie.
DANKE
Spenden können an folgendes Konto getätigt werden:
Kontoinhaber: Hand in Hand für Tay-Sachs & Palliativkinder
IBAN: AT83 3432 2000 0052 3001
BIC: RZOOAT2L322
Verwendungszweck: Madeleine
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