We had my first born, Emeryck, during the height of COVID lockdowns. No visitors were allowed in the hospital after his C-section. He was born without a single blemish on him. It wasn't until the next day that his skin started to blister.
Nurses and doctors weren't much help, assuming it was due to acidic diarrhea. We were told: severe eczema, staph, not bathing him, and even abuse. Fast forward a year filled with appointments, and still no answers.
It wasn't until he was three and his youngest sibling, Dasha, was born. She was also born via C-section but was born with already dystrophic nails and small wounds on her ears. My heart sank knowing that my gut was right; that whatever was happening to my oldest, Emeryck, was genetic.
A month later, we were referred to infectious disease at U of M Children's, where Dasha and Emeryck were diagnosed with Epidermolysis Bullosa (EB). It would still take another year after that visit to get a doctor to actually order the genetic testing for their subtype. They both carry the LAMC2 gene for Junctional Epidermolysis Bullosa (JEB). Three years had passed without any answers. In that time, I could've known how to properly care for Emeryck's skin.
Before Dasha, I had never heard of EB and had no idea how to care for them. The lack of knowledge and awareness within the medical community, and even the public, has been a challenge. We have even had the police called and been reported to CPS because of Emeryck and Dasha’s facial wounds.
It's been nearly a year since their genetic testing. We've battled with Medicaid coverage and lack of bandages, but the EB community has always been such a big support for us. Without the EB community and debra of America, I never would've learned proper wound care. debra helped us with bandages for the last year and a half while we struggled with coverage for my son. He was also chosen for the Smile Fund, and debra gifted us tickets to see Monster Jam Live, which was a dream come true for him. debra helped me overcome my lack of knowledge barrier.
- Sophia, Mom to Emeryck and Dasha
debra of America is proud to have supported Emeryck and Dasha through our Wound Care Distribution and other services. Through this program, critical wound care supplies are delivered to thousands of families nationwide at no cost. This essential program ensures that those with EB have access to the supplies they need to manage their condition, even when insurance falls short.
Join the fight against EB. Your tax-deductible donation ensures that no family faces the challenges of EB alone.
