<div><a href="https://www.heinerbruno.com" target="_blank" rel="noreferrer noopener">www.heinerbruno.com</a>
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<div><a href="https://on.orf.at/video/14250720/15756682/hoffnung-fuer-bruno-bub-leidet-an-seltener-erkrankung-thema-vom-11112024" target="_blank" rel="noreferrer noopener"><a href="https://on.orf.at/video/14250720/15756682/hoffnung-fuer-bruno-bub-leidet-an-seltener-erkrankung-thema-vom-11112024" target="_blank" class="" rel="nofollow noopener noreferrer">https://on.orf.at/video/14250720/15756682/hoffnung-fuer-bruno-bub-leidet-an-seltener-erkrankung-thema-vom-11112024</a></a>
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<div><a href="https://www.krone.at/3582653" target="_blank" rel="noreferrer noopener"><a href="https://www.krone.at/3582653" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.krone.at/3582653</a></a>
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<div><a href="https://www.heute.at/s/seltene-krankheit-jetzt-braucht-bruno-4-millionen-euro-120044649" target="_blank" rel="noreferrer noopener"><a href="https://www.heute.at/s/seltene-krankheit-jetzt-braucht-bruno-4-millionen-euro-120044649" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.heute.at/s/seltene-krankheit-jetzt-braucht-bruno-4-millionen-euro-120044649</a></a>
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<div><a href="https://www.20min.ch/story/oesterreich-bruno-7-braucht-millionen-fuer-lebensrettende-behandlung-103137139#Echobox=1719466714" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.20min.ch/story/oesterreich-bruno-7-braucht-millionen-fuer-lebensrettende-behandlung-103137139#Echobox=1719466714</a>
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<div>Language: German/English/Spanisceh/Hungarian
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<div>Bitte hilf mir ein vollkommenes Leben zu führen!
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<div>Mein Name ist Bruno Heiner, geb. am 11.10.2016 in Österreich. Ich bin ein fröhlicher, lustiger,
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<div>fast 8 Jahre alter Bub. Derzeit gehe ich in die Pestalozzi Schule in Wiener Neustadt, ich lerne gerne,
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<div>ich habe Bestnoten in der Schule.
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<div>Am 23.01.2024 spürte ich einen starken Muskelkrampf am rechten Bein, er wurde von mehreren Ärzten begutachtet und analysiert und zum Schluß wurde am 29.02.2024
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<div>leider die Krankheit DMD bei mir bestätigt.
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<div>Ich möchte mein Leben, soweit es geht, normal weiterführen können und möchte nicht mein
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<div>weiteres Leben im Rollstuhl verbringen. Die Verschlechterung dieser Krankheit ist durch eine einzige
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<div>sehr teure Therapie in den USA herauszögern,die Sarepta Elevidys und ca. $4,333,877.35 kostet.
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<div>Über diese Krankenheit:
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<div>Duchenne Muskeldystrophie (DMD) ist eine angeborene, Erbkrankenheit, bei der die Muskelzellen verfallen. Anstatt der zerfallenen Muskelfaser entstehen Fett- und Bindegewebe,die aber die Beweglichkeit des Körpers nicht unterstützen können. So wird die betroffene Person
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<div>immer schwächer. In diesem konkreten Fall kann der Betroffene durch den Abbau seiner Muskeln
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<div>schon mit 10 Jahren einen Rollstuhl angewiesen sein. Mit fortschreitendem Muskelschwund sind spater auch Herz- und Atmungsmuskulatur betroffen.
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<div>Bitte teilt dieses Schreiben, damit es noch mehr Leute lesen können und ich dadurch mehr Chance fürs Erhalten meiner Beweglichkeit haben kann!
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<div>Es gibt nichts Schlimmeres, als zu erleben, dass meine Eltern meinem Verfall tatenlos zusehen müssen! Die Eltern meiner Schicksalsgenossen erleben täglich dieses Gefühl.
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<div>Ich bedanke mich bei jedem für seine Hilfe!
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<div>Bruno
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<div>Please help me to live a full life!
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<div>My name is Bruno Heiner, I was born in Austria on 11 October 2016. I am a 7.5-year-old cheerful and happy boy. I attend Pestalozzi elementary school in Wiener Neustadt with excellent grades.
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<div>On 23 January 2024 a strong muscle spasm occurred in my right leg. After thorough genetic examination the doctors diagnosed DMD , that is Duchenne muscular dystrophy, on 29 February 2024.
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<div>I would like to avoid being forced into a wheelchair, and the progress of the illness can only be slowed down with the gene therapy at present, which has high costs.
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<div>(Sarepte Elevidys) ,The estimated total out-of-pocket costs to receive this treatment in a special facility in the US $4,333,877.35
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<div>What you should know about this illness:
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<div>Duchenne muscular dystrophy is the gradual degradation of the muscles, a genetically determined hereditary illness. The muscle cells are getting replaced by fat and connective tissue, which are unable to function like the strong muscles. Consequently the patient becomes weaker and weaker. What is more, by the time I am 10 years old, I will be forced into a wheelchair and in a few years’ time the dystrophy will spread over to the heart and respiratory muscles.
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<div>Please share this post so that it reaches as many people as possible giving me a chance to retain the ability to walk longer.
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<div>Bruno
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<div>¡Ayúdame a tener una vida plena!
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<div>Me llamo Bruno Heiner, nací el 11 de octubre de 2016 en Austria y tengo casi 8 años. Soy un niño alegre y simpático.
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<div>Actualmente voy a la escuela Pestalozzi en Wiener Neustadt, me gusta mucho aprender y saco muy buenas notas.
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<div>El 23 de enero de 2024 me dio un fuerte espasmo muscular en la pierna derecha. Después de muchas pruebas médicas, finalmente el día 29 de febrero me diagnosticaron la enfermedad distrofia muscular de Duchenne (DMD).
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<div>Me gustaría seguir teniendo una vida normal dentro de lo que cabe y evitar estar confinado a una silla de ruedas, pero en estos momentos la única terapia que puede ralentizar el desarrollo de la enfermedad sólo está disponible en los Estados Unidos y tiene un coste muy elevado (Sarepta elevidys, 4.333.877,35 $).
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<div>¿Qué se sabe sobre esta enfermedad?
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<div>La distrofia muscular de Duchenne es una enfermedad congénita y hereditaria que destruye progresivamente las células musculares. Las células musculares son sustituidas por tejido adiposo y conjuntivo, incapaz de realizar trabajo muscular, y el paciente se debilita cada vez más. En este caso concreto podría estar confinado a una silla de ruedas a la edad de 10 años, después de un tiempo también se verá afectado el funcionamiento del corazón y los pulmones.
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<div>¡Comparte por favor este post con el mayor número de personas posible para que tenga más posibilidades de seguir caminando!
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<div>Nada me entristece más que ver cómo mis padres presencian mi declive sin poder hacer nada para remediarlo.
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<div>Es un sentimiento con el que los padres de otros niños con DMD tienen que vivir día a día.
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<div>¡Muchas gracias vuestra ayuda!
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<div>Bruno
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<div>Segits te is ,hogy teljes életet élhessek!
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<div>A nevem Heiner Bruno 2016.10.11 születtem Ausztriában , 7,5 éves vidám,boldog fiú vagyok.
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<div>Jelenleg a Wiener Neustadti Pestalozzi iskolába tanulok kitűnő eredményekkel.
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<div>2024.01.23. a jobb lábamban egy erős izomgörcs jelentkezett, megkezdték a vizsgálatokat és 2024. 02.29. a genetikai vizsgálat megerősitette a DMD betegséget.
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<div>Szeretném elkerülni a kerekesszékbe kerülést, amit jelenleg egy génterápiával lehet megállitani aminek jelentős költsége van.(sarepta elevidys 4,6mill USA dollár)
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<div>Mit lehet tudni erről a betegségről:
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<div>A Duchenne-féle izomdystrophia az izomsejtek fokozatos pusztulásával járó veleszületett, örökletes betegség. Az izomsejtek helyét az izommunkára képtelen zsírszövet és kötőszövet tölti ki, ebből adódóan a beteg egyre erőtlenebb lesz. Ráadásul így 10 éves korára kerekesszékbe fog kényszerülni, utána néhány éven belül kiterjed majd a szív- és légzőizmokra is.
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<div>Kérlek benneteket osszátok meg a posztot ,hogy minél több emberhez eljusson és több esélyem legyen a járóképesség megtartásához!
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<div>Nincs annál szörnyűbb, mint amikor szüleim végignézik leépülésémet!
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<div>A Duchenne-szindrómás társaim szüleinek ez az érzés a mindennapok része.
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<div>Köszönök szépen minden segitséget!
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<div>Bruno
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Help me, I have Duchenne  Muscular  Dystrophy disease

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Help me, I have Duchenne Muscular Dystrophy disease

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