A Hope for Sila Esen

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Güzel kizimiz Sila Esen Bal´a maalesef 2014 yılında Rett Sendromu teshisi konuldu. O tarih´de iki yasinda olan kizimiz her saglikli cocuk gibi gelisim gösterdi. Konusmaya ve yürümeye basladi. Ikinci dogum gününden kisa bir zaman sonra gelisiminde duraklamalar yasandi ve yavas yavas gerilemeler basladi. Bu gerilemelerden hayatimizi en cok etkileyen konusmayi birakmasi ve el becerilerinin kaybi idi.

Bununla birlikte bu rahatsizlik ile ilgili heyecan ve umut verici gelismeler yasanmaktadir . Rett Sendromu Araştırma Vakfı, Tedaviye Yol Haritası adlı üç yıllık bir stratejik plan geliştirdi. Rett'in tersine çevrilebileceğinin bilimsel kanıtlari bulunmaktadir. Farelerde yapilan arastirmalarda Rett sendromunun tam olarak tersine dönüsmesinin mümkün oldugu görülmüstür. Şimdi RSRT'nin planı, farelerdeki elde ettikleri basariyi, Rett´li kizlarda gerceklestirmektir. Fakat RSRT´nin bu basariyi elde edebilmesi ve kizlarimizin hayatini degistirebilmesi icin, bizlerin ve özellikle de sizlerin finansal anlamda destegine ihtiyaci var.

Bu kampanyaya yapmis oldugunuz destek ile, kizimiz Sila Esen ve birçok baska Rett Sendromundan rahatsiz olan kız cocuklarina ve ailelerine umut olacaksiniz. Desteğiniz için cok teşekkür ederiz. Bu sayfayi cevrenizdeki sizin gibi duyarli insanlarla paylasmanizi dileriz. Saglikli kalin.

ENGLISH:

Our beautiful daughter, whose name is Sila Esen Bal, was diagnosed in 2014 with a devastating neurological disorder called Rett Syndrome. The symptoms of Rett, which afflicts almost exclusively girls and women, are severely life-altering. Girls develop normally until they are about a year old, then they regress, losing any skills, including in most cases the ability to walk and talk. A host of other painful symptoms ensue. It is a dreadful disorder.

However, there is great hope for families that have a daughter with Rett. Research has made major strides in recent years. A non-profit called the Rett Syndrome Research Trust (RSRT), located in Connecticut, is leading the way to spur and support the most promising research. RSRT recently launched a three-year, $33 million strategic research plan called Roadmap to a Cure that has a bold and exciting goal of making Rett the first neurological disorder that could be cured. Remarkably, the disorder has been reversed in mouse models. Now RSRT plans to translate that reversal to girls and women with Rett. Your support would be highly appreciated. Many thanks for your support and don't forget to share this to anyone who you think might want to donate too!

GERMAN:

Unsere hübsche Tochter Sila Esen hat sich bis zu ihrem 2. Lebensjahr wie ihre gleichaltrigen entwickelt, sie fing an einige Wörter zu sprechen, zu laufen und benutzte ihre Hände ganz altersgerecht. Doch nach ihrem zweiten Geburtstag wurde sie immer stiller, bis sie irgendwann nichts mehr sagte. Auch verlor sie den funktionellen Gebrauch ihrer Hände. Sie fing an sich sozial und emotional immer mehr zurück zu ziehen. Es begannen  Schrei- und Weinphasen, sie hat teilweise stundenlang geweint und wir wussten nicht, was mit unserem Kind geschah. Bis wir die verheerende Diagnose Rett Syndrom bekommen haben und sich dadurch unser Leben gänzlich verändert hat.

Das Rett Syndrom gehört zu den Autismus-Spektrum-Störungen und geht mit schweren körperlichen Behinderungen einher. Hauptsächlich sind Mädchen von dieser Erkrankung betroffen. Zu den Symptomen und Beschwerden gehören epileptische Anfälle,extreme Angststörungen, Erkrankungen des Skeletts (wie z.B. Skoliose) und leider vieles mehr.

Aber es gibt Hoffnung für die 350.000 Rett-Mädchen auf der ganzen Welt und ihre Familien. Denn das Rett Syndrom ist heilbar. Es gibt wissenschaftliche Beweise dafür, dass die Mutation des Gens MECP2 umgekehrt werden kann. Die Störungen die durch das Rett Sydrom verursacht werden, konnte an Mäusen rückgängig gemacht werden. Die gemeinnützige Organisation RSRT in Connecticut hat einen vielversprechenden strategischen Forschungsplan namens „Roadmap to a Cure“ erstellt. Dieser Forschungsplan beinhaltet die Umkehrung des Rett Syndroms an Rett Mädchen und Frauen. Bis dahin ist es ein langer Weg, aber vorallem auch ein teurer Weg. Denn für die Umsetzung werden 33 Mio $ benötigt. Und hier kommen Sie mit ins Spiel. Die RSRT benötigt ihre finanzielle Unterstützung, um dem Forschungsplan umzusetzen und um das Leben unserer Mädchen zu verändern. Jeder Cent den Sie hier Spenden wird an die RSRT weitergeleitet und für die weitere Forschung und Umsetzung eingesetzt. Werden Sie ein Teil unserer Hoffnung und bitte spenden Sie an RSRT. Vielen Dank für ihr Unterstützung und bitte denken Sie daran diesen Link an weitere Personen zu senden.

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 (17)

  1. Ralf Wilwerscheid 
    2 months ago
    $50
  2. Selma Gültekin 
    2 months ago
    $100
  3. Leonid Hofmann 
    4 months ago
    $50
  4. Michael Stasny 
    4 months ago
    $750
  5. Anonymous 
    5 months ago
    $50
  6. Gudrun Finger 
    5 months ago
    $50
  7. Meltem Öter 
    5 months ago
    $100
  8. Yilmaz Öter 
    5 months ago
    $100
  9. Nes & Nil & Susi Altinkizlar 
    5 months ago
    $150
  10. Servet Sahin 
    5 months ago
    $250
  11. Suzan Sahin 
    5 months ago
    $250
  12. Mehtap Hitir 
    5 months ago
    $150
  13. Anonymous 
    5 months ago
    $250
  14. Elif Tuna 
    5 months ago
    $100
  15. Stefanie Niermann 
    5 months ago
    $50
  16. Stefanie Niermann 
    5 months ago
    $50
  17. Ersay Bal 
    6 months ago
    $500

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