‘Disease you’ve never heard of’ does not stop 10-year-old and family seek better treatment, cure

A bath can be a 5-hour process, twice or three times a week. Soaking in soothing salt water for an hour helps loosen the bandages that tend to stick to the chronic, blistered and oozing wounds that may erupt anywhere on Erik’s body.

“He’s had one bath in his life I can remember that he didn’t have any wounds,” his mother said, sitting at the kitchen table in Keymar.

Then comes the bandaging. Kathy Barnes must spend hours wrapping her son, first covering open wounds with non-stick silicone and antibacterial layers.

While that goes on, Erik said he usually watches some episodes of “Teenage Mutant Ninja Turtles.”

On days that Kathy does not bathe him, she checks the bandages for signs of infection and changes some as needed.

Kathy and her husband Perry have three grown children and have become therapeutic foster parents, which means they care for children with special needs. The family met Erik when he was 9 months old, and he was their first foster child.

Kathy and her mother Betty Foster, a nurse, visited Erik three times a week to learn how to care for him before they brought him home at 10 months old. The Barneses, who live in Foster’s house, adopted Erik when he was 2.

There are three types of inherited EB, and Erik has recessive dystrophic EB, one of the most severe types, according to Geri Kelly, a nurse educator with the Dystrophic Epidermolysis Bullosa Research Association of America. 

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