Elli's Smile Fund: Finding a Cure for STXBP1 in honor of Elena Ramnialis 2004-2020
We honor Elena Ramnialis with this fund, established to support research to find a cure for STXBP1 disorders.
Elli's family thanks you for your donation and will be notified of all donations made in memory of sweet Elli.
Written by Elena’s family:
Our beloved daughter Elli passed away on May 15, 2020. Elli was born on May 5, 2004, in Friedrichshafen, Germany. She had a rare mutation of a gene called STXBP1. Despite this Elli was always happy, full of joy and knew how to enjoy life. Although she could articulate only few words she was always able to convey her feelings and also her wishes not only to her family but to the entire environment she was living in.
When the few words or the sign language she used were not enough to talk with us, she expressed herself with her beautiful blue eyes and her smile.
Elli loved all kinds of music, she could dance all day long. When the weather permitted she spent time either on her swing in the garden or in her E-bike waving and smiling to everyone she met. And a good day for Elli always finished with a big portion of ice cream!
Elli taught us in her short life so many things about values, tolerance, acceptance and joy. As our life was shaped around Elli’s needs we are facing now a huge emptiness and loss, and miss her more than words can express.
We thank you all for your donation to "Elli's Smile Fund" which will provide support to find a cure for STXBP1 disorders, and help other children and families.
-Sonja & Christos
Please use the following email address if you would like to include a message to the family with your donation: Ellissmilefund@gmx.de