Sarah Ford | October 28, 2014

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

By Patti Borda Mullins

White gauze bandages cover 10-year-old Erik Barnes from neck to toe every hour of every day, except right after a bath.

Layers of antibacterial materials, padding and bandage protect raw wounds and try to prevent others caused by the genetic condition he has called recessive dystrophic epidermolysis bullosa.

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

>> Continue Reading

Get Resources and Insights Straight To Your Inbox

Explore More Articles

The Time to Act is Now

March 7, 2025

The results of the 2024 National Assessment of Educational Progress (NAEP) are in, and the findings are, in a word, heartbreaking. This assessment serves as…

Read Article

Open Position:  Non-Profit Account Manager, Employee Assistance Funds & Scholarships (Remote – Full Time)

February 20, 2025

We are professional, agile, customer-centric and our goal is to inspire employees and organizations to support causes they care about. We help nonprofits fundraise unrestricted,…

Read Article
Humane World for Animals

EXCITING NEWS: Humane Society of The United States and Humane Society International is now HUMANE WORLD FOR ANIMALS

February 19, 2025

For over 70 years, Humane World for Animals, formerly called the Humane Society of the United States and Humane Society International, has worked around the globe to…

Read Article

Get Resources and Insights Straight To Your Inbox

Receive our monthly/bi-monthly newsletter filled with information about causes, nonprofit impact, and topics important for corporate social responsibility and employee engagement professionals, including disaster response, workplace giving, matching gifts, employee assistance funds, volunteering, scholarship award program management, grantmaking, and other philanthropic initiatives.

newsletter-mock