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鈥檚 body.

鈥淗e鈥檚 had one bath in his life I can remember that he didn鈥檛 have any wounds,鈥 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 鈥淭eenage Mutant Ninja Turtles.鈥

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鈥檚 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 精东影业.听

Get Resources and Insights Straight To Your Inbox

Explore More Articles

February is Marfan Awareness Month!

February 3, 2025

Marfan syndrome affects an estimated 1 in 5,000 people regardless of race, ethnicity, or gender, and experts estimate听that nearly half the people who have Marfan…

Read Article

February is Cancer Prevention Month

February 3, 2025

A substantial proportion of cancers could be prevented, including all cancers caused by tobacco use and other unhealthy behaviors. Excluding non-melanoma skin cancer, at least…

Read Article

Celebrating the Agents of Change this Black History Month

February 3, 2025

During Black History Month, which takes place each year during the month of February, there is much to celebrate about the past achievements and impact…

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