Be Maggie’s Angel

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My sister Maggie is often panicking and is deeply frightened. She seems to realize that her body becomes her enemy. She is not able to enunciate her wishes, feelings or troubles. Not anymore. Her body keeps locking her away, further day by day. Like prisoners, 350,000 girls with Rett Syndrome are only observers of the world, with their thoughts and ideas stuck in their heads.

Maggie is special and tender, with a big passion for music. She seems to understand music in a way we don‘t. It is the only thing that calms her when she is upset. Music allows her to escape the world which shows her its cold back. But with Rett Syndrome she will never dance nor sing. With Rett Syndrome she will not even be able to choose the song she wants to hear.

Rett Syndrome is not like a single stroke of fate which breaks your heart with a uniquely defined cut and after some time you can put the halves together again with the comforting glue of time. It is more like a painful process in which your heart gets splintered up very slowly in so many little parts you can‘t figure out how to fix it anymore. The time becomes your enemy. It never stops – it only gets worse. So, what is left to hold onto? I was struggling for a long time to find it. But I finally realised there is something big, courageous and powerful to hold onto and it can't be taken from you until the very end: It is hope.

Please make our hope come true. Reverse Rett.

German

Maggie ist allein. Wenn sie jemandem erzählen möchte, was ihr auf dem Herzen liegt, ist da nur sie selbst.

Vor anderthalb Jahren sprach sie noch 300 Wörter, sang Lieder in Latein, Italienisch und Englisch.

Das Rett Syndrom nimmt ihr ihre Sprache.

Ihre Finger wollen nicht mehr so wie sie. Und die Tatsache, dass ihr auch die Fähigkeit zu laufen geraubt werden könnte - meiner Maggie, die den ganzen Tag nichts anderes tut, als hin und her und schneller und langsamer zu laufen, macht mir so viel Angst, dass ich es nicht aussprechen will.

Sie ist sehr intelligent und ihre größte Leidenschaft ist Musik. Es ist ihre Flucht aus einer Welt, die ihr den eisigen Rücken zugekehrt hat, ein Versprechen,  dass alles gut wird. Sie würde gerne tanzen und singen.

Mit dem Rett Syndrom ist es ihr nicht möglich, das Lied auszuwählen, das sie hören möchte.

Es gibt so viel Hoffnung. Die Aussichten auf einen Forschungsdurchbruch sind bemerkenswert.

Wir werden sie tanzen und singen sehen, die 350.000 Mädchen, die noch Gefangene ihres Körpers sind.

Doch wir brauchen eure Hilfe. Das Syndrom ist sehr selten. Die Finanzierung der Forschung beruht hauptsächlich auf Spenden, es gibt kein öffentliches Bewusstsein. Pharmaindustrie und Regierung scheinen momentan nicht an einer Heilung des Rett Syndroms interessiert zu sein.

Wir lassen uns die Hoffnung nicht nehmen.

Helft uns den Mädchen eine Stimme zu geben. Reverse Rett.

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (11)

  1. Helga Neudecker 
    10 hours ago
    $100
  2. Gabriele Wunderwald 
    2 months ago
    $500
  3. Anonymous 
    3 months ago
    $800
  4. Anonymous 
    5 months ago
    $300
  5. Anja Eppelein 
    6 months ago
    $100
  6. Philomena Winiger 
    6 months ago
    $100
  7. Urs Winiger 
    8 months ago
    $50
  8. Anonymous 
    8 months ago
    $500
  9. Siegfried und Roswitha Öhrlein 
    8 months ago
    $300
  10. Anonymous 
    8 months ago
    $1,000
  11. Katrin Winiger 
    8 months ago
    $300

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