How it all began

Großes Herz für Kleine. Künstler: Yannis Salpinkidi
Großes Herz für Kleine

It all began when the founder of our association, who herself is a mother of three, read an article about the "Butterfly Child" Alexander Dolgov. The russian boy was suffering from Epidermolysis bullosa. To this day this rare genetic disorder is said to be incurable, though it was proven, that under certain circumstances this ailment can be beaten. Working on an effective method of treatment for this disease, a group of American scientists presented the world with an approach that produced the first positive results. Sadly, Alexander could not be saved. The fault was not with the procedure, it was simply too late. The boy died of a skin infection, which he contracted on a hot day. Besides cancer, those are the most common cause of death for Butterfly Children.


Statistics show: One in every 50 thousand children is born with this disease – it is not that rare. Among the children participating in the American programm was a boy of the same age as Alexander. In his case, the scientists managed to change his condition from an acute stage to a less life-threatening one. If Alexander had made it to the treatment, he would have survived – and he would have been able to have a good life. This research programm that tried to find methodes of treatment for Epidermolysis bullosa was terminated. The reason for its cancellation was a lack of participants...


In September 2013, a group of volunteers, previously involved in organizing aid activities for children with severe and rare illnesses, came together and formed the german "Großes Herz für Kleine e.V." initiative.


In just a few months, the members of this association voluntarily provided several children with much needed medical care that they could not receive in their home countries.