“The blister wound on his leg is the worst without any skin from his ribs all the way down to the tips of his toes.”

The father’s depressed plea rang out. His son Baby John, not yet three days old, lay suffering in a bed with severely painful blisters and gaping wounds that threatened his very life. These were bloody blisters and wounds the father could neither heal nor stop from emerging on his son’s tiny face and body time and time again. Time was running out.

When Baby John was born, his parents learned he had rare EB Blistering Skin Disease. They had never heard of the disease. Now immersed in their own daily struggle and nightmare, they are all too familiar with the heartbreak that accompanies it: constant cries of pain, emerging blisters on the baby’s face, head, chest, arms, hands, fingers, legs, feet, and toes, a lack of weight gain due to bloody mouth, tongue and gum sores, and, reopened and bleeding wounds at every painful bandage change. And, for Baby John, the disease is getting worse every day.

“It’s so painful to see as parents. I have to hold Baby John down so my weeping wife can change his bandages while we watch him bleed, hurt and cry. We feel helpless and numb.”