This rare, hereditary condition results in the skin being so fine and fragile like the wings of a butterfly that the children with this genetic defect are known as “Butterfly Children”. Whilst this may give the impression of delicacy and beauty, in reality, it is an extremely painful condition, requiring a high degree of care.
The Caritas Baby Hospital sees itself as a place “where those affected can receive medical care and information, practical advice and emotional support as well as swap experiences”, explained Lina Rahel, the head of the Social Services Department, who organised this event.
During the workshop, various aspects were examined: the genetic background to the condition, the right diet, correct wound management or how the children suffering from the condition and their families can be encouraged to have an active social life. Due to the great amount of positive feedback received, there will certainly be more meetings at the Caritas Baby Hospital of the “Butterfly Children” and their families.