According to the Mayo Clinic, Epidermolysis Bullosa (EB) is a rare genetic disorder that causes fragile, blistering skin. The slightest bit of friction on the skin makes the skin shear off or blister, resulting in a third-degree burn like feel. There is no cure, and treatment focuses on caring for blisters, preventing new ones and pain management.
Hayden Esser is a sweet 4-year-old boy born with this rare skin disease. He spends every day wrapped head-to-toe in special bandages to protect him from infection. His parents and home nurse apply these bandages at least once a day, more frequently if they are soiled.
When Hayden’s mom contacted his son’s support coordinator, Lori Wilson, and told her they needed a clean, private, safe space to store Hayden’s bandages and take his baths, and would BCFR be able to help with the cost of this nearly $40,000 project – Lori had to think outside the box to do what she could to meet the family’s needs.
“I had strongly encouraged the family to start with Veterans United because of working with them in the past with a couple of other families. I had a feeling they would help them out and wanted to see how much before we went down the avenue of spending time finding other agencies to reach out to for additional funding. I initially reached out to Marcus Jones at Veterans United Foundation and obtained the necessary paperwork the family needed to complete. I submitted that completed paperwork to Marcus and then there was a delay while the family was getting quotes on the project. Once I had the quotes, which was around $37,000, I sent them on to Marcus for their review,” said Lori.
Not only did the employees of Veterans United agree to help, their Foundation offered to pay for the entire sanitation room and all the cost associated to complete it. The Esser family will be able to finish their attic into a heated and cooled bandaging room and provide daily care to Hayden in a sterile environment.
“Lori has been a huge help for us,” said Hayden’s dad, Brandon Esser. “She is always willing to go the extra mile to help us get the things we need. If it wasn’t for Lori’s help, I’m not sure we would have been able to get any of the things that Hayden has needed over the past couple years.”
*Veterans United Foundation has raised over $51 million since 2011 through employee contributions. It is fully funded by Veterans United Home Loans and its employees.