For Romy

For Romy…

Our daughter Romy, one of the girls with MECP2 duplication syndrome, just about to turn thirteen. 

We are so happy to celebrate her birthday, but fear the fact that it might be her last…

After some rough first years and in spite of many respiratory infections, she became a very bright, happy toddler and brought so much love and joy to everyone around her.  That love is still getting stronger every day, but her beautiful smile vanished after seizures started three years ago.  And beside that smile, she also lost the ability to eat, communicate, crawl, stand and sit unassisted. 

We are willing to do everything, to give her back happiness and laughter, but we can’t do it alone!! 

Due to low bone density, she had several fractures in her legs and spine last year, causing her a lot of
pain and not being able to sit up for more than 20 minutes anymore. 

Please help us, and make life joyful again for Romy and all the other children fighting this devastating
disease!