Hilfe für Luisa
Vielen Dank an alle unsere Spender, wir haben unser Ziel erreicht.
Hallo, ich bin Luisa!
Ich bin 3 Jahre alt und wohne in Salzburg.
Als ich erst wenige Wochen alt war, wurde bei mir die fürchterliche Krankheit SMA (Spinale Muskelatrophie) diagnostiziert. Meinen Eltern wurde gesagt, dass ich mich bald nicht mehr bewegen könnte. Meine Lebenserwartung sei eingeschränkt auf 2 Jahre. Auch das Essen, Schlucken und Atmen würde ich verlernen.
SMA..?! Was ist das nun aber genau?
SMA ist eine Erkrankung der Nervenzellen, die für die willkürlichen Bewegungen der Muskulatur zuständig sind. Ursache ist eine Genmutation auf dem Chromosom 5.
SMA beeinträchtigt alle Muskeln des Körpers. Hauptproblem aber ist die Beteiligung der Atemmuskulatur, die für die Sauerstoffaufnahme und das Abhusten zuständig ist. Betroffene sind dadurch anfälliger für Infekte und Lungenentzündungen. Komplikationen der Atemwege sind die Haupttodesursache.
Ich werde aktuell mit einem seit 2017 in Europa zugelassen Medikament behandelt, das den Verlust von Nervenzellen reduziert und die Muskelstärke verbessert. Dieses Mittel kann meine Krankheit nicht heilen, aber hoffentlich den Verlauf stoppen.
Ich muss es lebenslang alle 4 Monate per Lumbalpunktion bekommen.
Dank dem Medikament kann ich so vieles woran keiner geglaubt hat!
Das Highlight ist mein Rolli den ich seit kurzem habe - und ich sag’s euch ich bin echt schnell damit! Na was soll ich euch sagen, ich hab’s allen bewiesen. Meine Therapien, Medikamente, Behelfsmittel etc. kosten natürlich sehr viel Geld. Meine Eltern mussten unsere Wohnung rollstuhlgerecht umbauen und nun muss ein immens teurer Dusch- und Toilettenstuhl finanziert werden.
Mehr über mich gibts auf der Facebook Seite : Luisa - Bärenstark trotz SMA
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