Robb Freed wasn’t sure what to do when he lost his 13-month-old son to a disease he didn’t even know existed.

“I had so much anger. So much anger,” Freed said. “You, as a human being, are made to be able to bury your parents. Maybe a brother or sister. You are wired to cope with that. It’s part of life. You are not wired to lose your kids.”

Freed’s son, Drake E., had been born with a rare genetic condition called epidermolysis bullosa, or EB. This disease, which only occurs in about one out of every 20,000 births, causes open sores to develop on a patient’s skin. Those afflicted with the condition require their bandages to be changed several times a day, which can be an excruciating process. There is no cure, and complications that arise from the disease can be fatal.






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