A mum’s EB story

I’m Natalie, mum to Sophie, and this is my EB story.

When Sophie was born, she looked perfect. We were overcome with joy and relief after a difficult pregnancy. But just hours later, everything changed. During a routine blood sugar check, the midwife’s face turned pale – Sophie’s skin had just fallen off, leaving a giant blister on her heel. I reassured her, thinking maybe newborn skin was just fragile. But when the same thing happened on her foot, I knew something was wrong.

Soon after, Sophie’s oxygen levels dropped, and she was whisked away to special care. I spent that night in a ward surrounded by mums and their babies, while mine lay in a glass box across the hall. It was one of the worst nights of my life.

Blisters kept appearing, and we were surrounded by paediatricians and dermatologists. When they said it looked like epidermolysis bullosa (EB), we had never heard of it. We were told not to look it up, but of course, I did. My heart sank as I read that EB could be life-threatening. After being told I would never have another child, the thought of losing Sophie was unbearable.

Then I found DEBRA through their website. For the first time, I could make sense of this complex condition. Doctors suspected EB simplex, and while that brought some relief, it still meant painful symptoms. I quickly learned how to pop and dress blisters and was introduced to an EB nurse who became invaluable. That’s when I heard about DEBRA again.

At first, I hesitated. We had no family history of EB – surely this wasn’t right? But as time went on, it became clear Sophie did have EB. A thread from her blanket tore through her skin like butter. Eventually, she was diagnosed with moderate dominant dystrophic EB.

Encouraged by EB nurses and other mums, I reached out to DEBRA. It felt strange as I’ve always given to charities, never been on the receiving end. But Erin, DEBRA’s EB Community Support Team Manager, put me at ease immediately. She lifted so many weights off my shoulders – providing information, ordering sheepskin liners, and helping me apply for benefits. That process would have been impossible with two kids, no sleep, and endless questions. Erin’s help was invaluable. Without her, we would have been stressed and struggling to afford adjustments for Sophie. DEBRA’s quick, hands-on support made all the difference.

Before Sophie was born, we booked a family holiday, dreaming of sunny days together. But EB changed everything. Her skin blistered no matter how much shade we found. Sophie spent most of the time lying on the sheepskin blanket DEBRA provided. I can’t imagine what we would have done without it. Seeing your baby’s skin peel and blister is heart-breaking but thanks to DEBRA, we could make her as comfortable as possible.

I wish every parent knew about EB. If they did, they would give everything to cure it. I would give anything to take away my girl’s pain. No child should suffer like this. Even a simple holiday becomes a nightmare – open wounds mean no pool, no salt water, constant fear of infection.

To any parent who has just heard the words “your baby has EB,” I’m so sorry. It’s not fair. But please know there is support out there. Getting in touch with DEBRA was the best thing I could have done for Sophie. It helped in more ways than I can express. Having a community that understands and fights beside you makes all the difference.

We’ve got this – because of DEBRA, and because of their supporters.