Alva was born on April 28, 2016 in Germany. She was a beautiful and happy little girl who lived a great life with her loving family. At 2.5 years old – shortly after we relocated from Germany to the United States – we had to desperately watch Alva losing many skills she had developed and interest in everything she used to love. After a year long struggle thinking she had autism we got the devastating diagnosis of Rett Syndrome in November 2019. Our world collapsed.
Rett Syndrome is a severe neurological disorder which makes every day a battle. Alva cannot speak or use her hands to eat or play, she needs help with all the little things occurring in daily life. However, she works tirelessly to participate in the life she loves, in a body that doesn`t want to cooperate. She has an enormous amount of energy and a strong will to fight! Alva loves to be active outside: running on the beach, swimming and swinging are her favorite things to do. She is lucky to have her big brother Oscar at her side as her best friend and helper. Seeing her smile and hearing her giggles fills our hearts and helps us to stay positive. Despite all the challenges we are thankful for all the little things and focus on what she CAN do instead of what she can`t.
We also believe in science. It is science which allowed for the discovery of the gene causing Rett, MECP2, and it is science which has allowed researchers the ability to reverse Rett within mice. And it is science which will make it possible to change Alva`s situation. Research has shown very promising results and we are hopeful that a cure will be possible in the near future. But not without the support of people like you! Your donation will help fund essential research of effective treatments and to find a cure for Rett. Your support will change our daughter`s life and the lives of thousands of other affected families all over the world. Your help is Alva`s HOPE!
100% of all funds raised from this campaign will go directly towards research working right now on different approaches to make Rett Syndrome history.
Please join us in the fight to reverse Rett!
Thank you so much!
Susann, Elliot, Oscar & Alva
“Where there is great love, there are always miracles.”
GERMAN
Alva wurde am 28. April 2016 in Dresden geboren. In ihren ersten zwei Lebensjahren schien alles normal, sie war ein fröhliches und pflegeleichtes Kind. Kurz nach unserem Umzug von Deutschland in die USA aber veränderte sie sich. Alva war gerade zweieinhalb Jahre alt, als wir zusehen mussten, wie sie viele ihrer erlernten Fähigkeiten und das Interesse an allem, was sie einmal gern hatte, verlor. Etwa ein Jahr lang dachten wir, es sei Autismus. Bis wir das Testergebnis im November 2019 schwarz auf weiß hatten: Die Diagnose Rett-Syndrom. Unsere Welt brach erneut zusammen.
Diese schwere neurologische Erkrankung macht aus jedem Tag einen Kampf. Alva kann weder sprechen, noch ihre Hände sinnvoll nutzen. Sie kann nicht spielen, nicht allein essen und braucht Hilfe auch bei allen anderen alltäglichen Dingen. Unermüdlich kämpft sie, um am normalen Leben teilhaben zu können, sie ist eingesperrt in ihren kleinen Körper, der nicht so mitmacht, wie sie es gern möchte. Aber Alva ist stark. Sie hat unbändige Energie und einen enorm starken Willen! Sie liebt es, draußen zu sein. Am Strand rennen, schwimmen und schaukeln gehören zu ihren Lieblingsbeschäftigungen. Immer an ihrer Seite: ihr großer Bruder Oscar – bester Freund, Helfer und Beschützer. Alvas Lachen und ihre Fröhlichkeit tragen uns und helfen uns, trotz aller Herausforderungen dankbar zu sein für all die kleinen Dinge.
Aber ein Blick in die Forschung und die rasanten Fortschritte der letzten Jahre gibt uns Hoffnung! Wir glauben fest daran, dass es eine Chance auf Heilung gibt – und zwar schon in naher Zukunft. Allerdings ist die Forschung größtenteils auf Unterstützung durch private Spenden angewiesen. Mit eurer Hilfe könnt ihr unserer Tochter Hoffnung schenken – Hoffnung auf ein einfacheres Leben und eine bessere Zukunft!
Die Einnahmen gehen zu 100% an den Rett Syndrome Research Trust in den USA. Die Organisation unterstützt Spitzenwissenschaftler aus aller Welt, die an unterschiedlichen Ansätzen zur Bekämpfung des Rett-Syndroms arbeiten.
Bitte helft uns dabei, Alva und den 350.000 anderen betroffenen Mädchen und Frauen weltweit eine Chance auf ein Leben ohne Rett zu geben.
Vielen Dank!
“Wunder erleben nur diejenigen, die an Wunder glauben.” (Erich Kästner)
Donation Amount
Minimum amount is $
Maximum amount is $100000
Donation levels
$5000
Alva's Champion
0 Donors
$1000
Alva's Hero
4 Donors
$500
Alva's Star
3 Donors
$250
Alva's Supporter
6 Donors
$100
Alva's Advocate
31 Donors
$50
Alva's Friend
29 Donors
| Name | Donate Amount | Date |
|---|---|---|
| Cindy Snapp | $100.00 | September 03, 2020 |
| Anonymous | $10.00 | August 23, 2020 |
| Elaina & Lane Shively | $50.00 | August 22, 2020 |
| Sven Beyer | $250.00 | August 22, 2020 |
| Mary Beth Hunter | $50.00 | August 13, 2020 |
| Anonymous | $30.00 | August 05, 2020 |
| Jenny Oliveira Getting | $50.00 | August 05, 2020 |
| Tanya shimer | $100.00 | August 04, 2020 |
| Kent Hansen | $100.00 | August 03, 2020 |
| Abigail Whiteing | $100.00 | August 03, 2020 |
| Brian/Cathy Letts | $100.00 | August 03, 2020 |
| Gloria and Chris Morl | $500.00 | August 03, 2020 |
| Lesley Gray | $50.00 | August 01, 2020 |
| Cynthia Clark | $50.00 | August 01, 2020 |
| Paul Liberatore | $50.00 | July 31, 2020 |
| Christine Blue | $200.00 | July 31, 2020 |
| Joseph Maureen Carbonara | $500.00 | July 30, 2020 |
| Pam Frisby | $100.00 | July 29, 2020 |
| Jeff Chu | $100.00 | July 29, 2020 |
| Anonymous | $50.00 | July 29, 2020 |
| Adam Smith | $100.00 | July 29, 2020 |
| Marie Nogrady | $100.00 | July 28, 2020 |
| Jack & Colleen McCarthy | $100.00 | July 28, 2020 |
| Joanne Smith | $100.00 | July 21, 2020 |
| Mary Leopold | $50.00 | July 20, 2020 |
| Sharon Swinney | $100.00 | July 20, 2020 |
| Joan Woodcook | $100.00 | July 20, 2020 |
| SALLY MANSON | $50.00 | July 17, 2020 |
| Katja Backhaus-Nousch | $50.00 | July 14, 2020 |
| Michael Hayden | $25.00 | June 14, 2020 |
| Claudia Brandenburg | $100.00 | June 14, 2020 |
| Renske Vroom | $25.00 | June 13, 2020 |
| Stephanie Angel | $50.00 | May 15, 2020 |
| Susann & Elliot Smith | $1,000.00 | May 04, 2020 |
| Anke & Frank Felgner | $50.00 | May 02, 2020 |
| Courtney Nielson | $100.00 | May 02, 2020 |
| Diana Boduch | $50.00 | April 30, 2020 |
| SueSi & René & Merli & Pepelino Bäger | $100.00 | April 28, 2020 |
| Linda Götzke | $50.00 | April 28, 2020 |
| Julia Koschel | $100.00 | April 28, 2020 |
| Annett Baalhorn | $100.00 | April 28, 2020 |
| Renske Vroom | $50.00 | April 26, 2020 |
| dionne ward | $500.00 | April 09, 2020 |
| Van Nature | $22.00 | April 02, 2020 |
| Renske Vroom | $50.00 | April 02, 2020 |
| Anonymous | $100.00 | March 31, 2020 |
| Anonymous | $200.00 | March 24, 2020 |
| Amy Lankford | $50.00 | March 22, 2020 |
| Michael McPherson | $100.00 | March 22, 2020 |
| Lisa Krieger | $100.00 | March 21, 2020 |
| Anonymous | $20.00 | March 19, 2020 |
| Bianka Stockburger | $250.00 | March 19, 2020 |
| Jason Day | $100.00 | March 18, 2020 |
| Samuel Manson | $200.00 | March 17, 2020 |
| Dietmar Klein | $100.00 | March 17, 2020 |
| Karla Scheller | $100.00 | March 17, 2020 |
| Resa Manson | $250.00 | March 17, 2020 |
| Gloria Morl | $100.00 | March 16, 2020 |
| Eugenio Zallo | $100.00 | March 16, 2020 |
| SueSi & René & Merli & Pepelino Bäger | $250.00 | March 16, 2020 |
| Julia Koschel | $100.00 | March 16, 2020 |
| Michael Segler | $50.00 | March 15, 2020 |
| Judy Smith | $1,000.00 | March 15, 2020 |
| Katja Backhaus-Nousch | $50.00 | March 15, 2020 |
| Kim and Dale Hartzell | $250.00 | March 15, 2020 |
| Joanne Smith | $50.00 | March 14, 2020 |
| Laura McPherson | $50.00 | March 14, 2020 |
| Laura McPherson | $0.00 | March 14, 2020 |
| Constanze Reinsberg | $50.00 | March 13, 2020 |
| Constanze Reinsberg | $50.00 | March 13, 2020 |
| Brook Edwards | $50.00 | March 13, 2020 |
| Yvonne Pahl | $1,000.00 | March 13, 2020 |
| René Weber | $50.00 | March 12, 2020 |
| Eric Münch | $50.00 | March 11, 2020 |
| Bärbel Pahl | $1,000.00 | March 11, 2020 |
| Sean Smith | $250.00 | March 11, 2020 |
| Stefanie Ogorek | $50.00 | March 11, 2020 |
| Stefanie Ogorek | $0.00 | March 11, 2020 |
| Max Langner | $50.00 | March 11, 2020 |
| Robin Bäger | $50.00 | March 11, 2020 |
| Thomas Peter | $100.00 | March 11, 2020 |
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