Haylie
Hallo ich bin Haylie May!
Ich litt am sehr seltenen Tay-Sachs Syndrom – bei dem die meisten Kinder schon im dritten Lebensjahr sterben.
Diese Krankheit wird durch ein defektes Gen ausgelöst, was wiederum bewirkt dass ein einziges Enzym, ein winzig kleiner Baustein im Körper nicht ausreichend produziert wird. Dadurch wiederum kann der „Abfall“ des Stoffwechsels nicht abgebaut werden was fatale Auswirkungen hat.
Die Zellen vorallem im Gehirn sterben langsam ab.
Kinder wie ich erblinden, werden völlig bewegungsunfähig, bekommen Epileptische Anfälle, werden unfähig zu essen, zu kommunizieren, wir werden Gefangene in unserem eigenen Körper. Eine Heilung gibt es noch nicht. 😔
Ich bin der Grund warum meine Mama diesen Verein gegründet hat, um Kindern wie mir zu helfen, um eine Heilung zu finden und um den Familien von diesen Kindern Halt und Zusammengehörigkeit zu geben.
Ich war eine unglaubliche Kämpferin und wurde so viel älter als der Durchschnitt, aber dennoch war meine Zeit am Ostersonntag gekommen. Ich habe beschlossen meinen kranken Körper zurück zu lassen und ein neues Leben ohne Einschränkungen zu beginnen.
Ich hatte genug vom Kämpfen, und genug davon das jeder Atemzug anstrengend war. Ich habe für meine Familie so lange durchgehalten, hab versucht ihnen noch jeden Wunsch zu erfüllen. Ich konnte meine kleine Schwester noch 20 Monate lang kennen lernen und ihre Liebe spüren, wir konnten noch einen wunderschönen Familienurlaub am Meer machen, und ich hielt sogar noch bis zu Mamas Hochzeit durch und schenkte ihr den schönsten Tag im Leben. Selbst die vielen Lungenprobleme und die Magendarm Grippe hab ich überstanden, weil ich einfach nicht im Krankenhaus sterben wollte. Sondern daheim, bei Mama, bei meiner Familie. Im Kreise der Menschen die mich so sehr liebten. Und nun war meine Zeit gekommen. Ich wollte in mein neues Leben starten, einem in dem ich laufen und lachen kann und gesund und glücklich sein darf.
An diesem besonderen Tag, im Alter von fast 8 Jahren war ich bereit, getragen von der Liebe meiner Familie, und schloss meine Augen für immer.
Meine Familie spricht weiterhin von mir, jeden einzelnen Tag. Sie sagen mir weiterhin jeden Morgen „Guten Morgen“ und jeden Abend „Gute Nacht“ und wie sehr sie mich lieben. So wie sie es schon immer machten, jeden Tag. Unsere Liebe bleibt, und wird für immer bleiben.
Ich schicke ihnen kleine Zeichen, eine kleine Libelle, die durch den Garten schwebt oder einen warmen Sonnenstrahl. Im Herzen bleiben wir verbunden.
Und Mama kämpft weiter in meinem Namen für die Heilung von Tay-Sachs und für eine bessere Versorgung von palliativ erkrankten Kindern in Österreich. Meine Botschaft wird weiterhin in die Welt getragen: Liebe ist das allerwichtigste! Es werden durch meine Geschichte auch weiterhin die Herzen der Menschen verändert.
Unsere Liebe ist unendlich.
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