Butterfly Children

• Photographer
  Ari Espay
• Agency / Studio
  Ari Espay Photography
• Prize
  Silver in Editorial / Photo Essay

Epidermolysis bullosa (EB) is a rare genetic condition that makes skin so fragile that it can tear or blister at the slightest touch or friction. Children born with it are often called “Butterfly Children” because their skin seems as fragile as a butterfly wing. Internal organs and bodily systems can also be seriously affected. There is no cure and daily wound care, pain management and protective bandaging are the only options currently available. These photos were taken at the 2022 Debra Care conference where doctors, scientist, labs and patients meet to hear about the latest research.