Garrett: The Boy Beneath The Bandages
Epidermolysis Bullosa, or, EB, is a rare genetic skin disease that affects 100,000 children across the United States alone. It is a disease that recognizes no geographic border, culture, sex, or aspect of life. Children born with this disease lack the ability to produce the collagen-7 protein that acts as a glue to bind the inner and outer layers of skin together. Their skin is extremely sensitive and fragile with open wounds similar to third degree burns that never heal. The slightest friction or bump to the skin causes the surface to blister and break down. EB kids live relatively short lives wrapped in bandages, and constant pain.
This series of images is a culmination of 6 years and counting of working with Garrett and his family on a weekly basis, and editing through 15,000 photos. Started when Garrett was 12, Garrett: The Boy Beneath The Bandages continues to tell the story of a now 19-year old man named Garrett, his family, and the challenges of everyday life they face because of a debilitating disease. EB not only takes a toll on its victims and their families, it also affects their friends, caregivers, and the communities that help them. Through these images I will attempt to give a face to this horrific, and unpublicized disease.
As a visual storyteller, my goal with this story was to create images that create an instant bond between the viewer and subject. These images open a door into Garrett’s world—placing the viewer ‘in the moment’ as if they were really there, creating an instant emotional connection. After viewing these images the viewer can’t help but feel as though they personally know Garrett and have suffered with him.