LeonieBB

Leoni

Hallo ich bin Leoni!

Nach zwei Eileiterschwangerschaften waren meine Eltern auf künstliche Befruchtung angewiesen. 8 Jahre und 4 Versuche später, war es dann endlich soweit.
Anfangs schien meine Geburt normal zu verlaufen, geriet aber später ins Stocken. Für einen Kaiserschnitt war es zu spät, also holte man mich mit Saugglocke und Zange in die Welt. Ich brach mir dabei das Schlüsselbein.

Da war ich also, dieses kleine Neugeborene, dass sich stundenlang ins Leben kämpfte, mit gebrochenem
Schlüsselbein.

Als mein Papa neben dem Brutkasten steht und dieses kleine Wunder beobachtete, wie ich am Bauch lag und ruhig atmete, stützte ich mich plötzlich mit meinen Händen auf und hob meinen Kopf, eine Kämpferin von Anfang an.
Ich war eine kleine Löwin!

2009 hatte ich dann meinen ersten Krampfanfall, In der ersten Jänner Woche 2010, begann ich des Öfteren zu stürzen, mein Gleichgewicht schien gestört zu sein. Beim trinken fallen mir die Hände nach unten, im Sitzen nickte ich mit dem Oberkörper nach vor. Ich blinzelt sehr oft, verdrehte dabei ab und zu die Augen. Im EEG zeigte sich, dass jedes Nicken und Blinzeln eine kurze Absence, ein Anfall war. Hochgerechnet werden es um die 150-200 pro Tag gewesen sein.

photo by Suzy Stöckl

Die Zeit der Untersuchungen begann. EEG, MRT, PET, Liquorpunktion. Mein Zustand verschlechterte sich kontinuierlich . Ich sprach nicht mehr, sah mir keine Bücher mehr an, blättert sie nur teilnahmslos durch. Ich reagierte kaum wenn man mich ansprach. In der letzten Novemberwoche besuchten wir gerade den Sternthalerhof, als wir die schreckliche Diagnose NCL bekamen.

Auf der Fahrt vom Sterntalerhof nach Hause schlief ich in  Papas Armen,
es war Abend und es schneite das erste mal in diesem Jahr.
Papa musste an Goethes Erlkönig denken und konnte die Tränen nicht mehr zurückhalten.

Im Laufe der Zeit wurden meine Anfälle immer schlimmer, die Medikamente wirkten nicht mehr und wir mussten ständig neue einstellen. Mittlerweile bekam ich zur selben Zeit 3 verschiedene Anti-Epileptika. Zeitweise waren es  sogar 5 verschiedene zur selben Zeit. Immer häufiger hatte ich „Lachanfälle“. Ich musste ohne Grund lachen und konnte zum Teil über Stunden nicht mehr aufhören zu lachen. Ich musste oft zittern und hat viele Spastiken.

Am 1. August 2012 haben wir im Kreis der Familie meinen 6. Geburtstag und den 15. Hochzeitstagmeiner Eltern gefeiert.

Am 17.März 2013 schlief Leonie nach langem Kampf friedlich in den Armen Ihres Vaters Michael für immer ein. Sie schenkte Ihren liebenden Eltern ein letztes Lächeln und zeigte ihnen auf diesem weg dass sie ihren Frieden gefunden hat.
Wir vermissen Sie schrecklich, und werden diese wundervolle kleine Löwin niemals vergessen!

Besucht Leonies Gedenkseite unter: http://www.gedenkseiten.de/leoni-melinda-warter/

 

Eva

Eva ist die Gründerin und Vorsitzende des Vereins. Sie ist die Mama von unserem Engel Haylie welche am Tay-Sachs Syndrom litt und im April 2018 verstorben ist. Haylie war der Grund warum dieser Verein gegründet wurde und so wurde er in gewisser Weise zu ihrem Vermächtnis. Haylie war ein große Inspiration und wir werden sie nie vergessen.

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