Madeleine
Hallo Ich heiße Madeleine!
Ich bin 3 Jahre 4 Monate 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.
eure Madeleine
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