Five years ago, Ken met a young girl named Rachel while shopping at the mall. "I saw this beautiful little girl with this amazing red hair," he says. "She was in a wheelchair, covered in bandages from her neck down."
Ken says he was instantly drawn to Rachel. After striking up a conversation, he learned that she suffers from a rare genetic skin disorder called epidermolysis bullosa (EB). This painful, incurable disease causes skin to blister and fall off in sheets. "Aside from her beautiful red hair, I saw her little hands," Ken says. "From all of the scarring and blistering, they had webbed over."
Children like Rachel are often called "butterfly children" because their skin is as fragile as a butterfly wing. They must be wrapped in gauze at all times to prevent injury or a deadly infection. "I know that Rachel came into my life as a reminder for me to keep my priorities straight," Ken says.