Our daughter, Addelyn Elizabeth Farah, was born prematurely with a stomach blockage. We had an idea that there was an issue with her stomach, but not to the extent that it was... we learned she had a pyloric atresia. The hospital where she was born didn't know what was wrong but knew she needed surgery, so before I could truly meet her, she was whisked away to a different hospital than me.
They kept everything really quiet until I was discharged from my own hospital. Within five minutes of being wheeled into her room, we were bombarded with everyone waiting to talk to us about her believed condition: Epidermolysis Bullosa. They didn't know what subtype she had—we needed genetic testing to confirm—but they had a strong assumption that we needed to proceed with caution, as this was most likely EB.
Addelyn was diagnosed with Junctional EB with pyloric atresia. Pyloric atresia is EXTREMELY RARE, and when it is found, it’s commonly accompanied by EB. While she had a tube to suck the air and mucus buildup out of her tummy so she wouldn't "blow up," she was nutritionally supported by a PICC line. We pushed her pyloric atresia repair surgery back until they could pull together a team of well-informed doctors to perform her delicate surgery.
Addelyn's exterior skin had erosion, but it was very mild. Her internal mucosa was what was most affected. For the months we had with Addelyn, we were her biggest advocates, and she made quite the following at her hospital. Our primary nurses became our family, and we were the go-to guides for everything Addy. Anyone who came into her room would proceed with caution and check with us first.
Before we knew it, we were teaching nurses, doctors, and therapists all about EB and how to properly touch, bandage, and treat Addy. Nothing happened without a double-check. If she was going to surgery, we made sure her emergency bagging mask was close by. If her bandage fell off, we'd know if someone who didn't know her condition had changed it, as we’d deal with the wound repercussions for weeks or months to come.
No fault to anyone—there is not enough information out there to properly teach everyone. And that is why I fight. If nothing else, I fight to bring awareness. We shouldn't have to carry a card to explain our child isn't contagious or that their wounds are not maliciously put there. I fight for all the future families who have never heard of EB, who may meet my same fate and be thrown into the ring of EB—sink or swim.
Ever since we found out there was even a CHANCE our daughter had EB, we immediately learned about debra of America, thanks to our amazing medical team at Children's Hospital of Wisconsin. There is a LOT of scary information out there regarding EB—outcomes, statistics, case studies, you name it. But debra was a safe space. I knew debra was going to be informative, supportive, and help give me the confidence to truly believe we could handle anything and everything that was going to get thrown at us.
To put it simply, debra just really knows what they’re doing. They have the science of being an informative, supportive, and kind organization down to a tee. I believe in my heart that debra is the best thing to happen to EB. The ability to spread awareness, fundraise for research, and offer support—every single resource is so helpful. I've been able to advocate in ways I would’ve been too scared—or wouldn’t have even known—how to do, like getting EB Awareness Week recognized in my state and city! The list could go on and on, but to summarize it: debra is made up of a group of good people. And we need more good people everywhere… especially on EB’s side.
- Serenity, Mom to Addelyn
debra of America is honored to have supported Addelyn and her family through our New Family Advocate Program and other services. Our New Family Advocate Program serves as a lifeline to new families when there is nowhere else to turn, providing essential education, wound care supplies, and ongoing support.
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