Rebuilding from the ashes: how DEBRA became our lifeline
Three years ago, my family’s world changed overnight. A house fire took everything we owned and left us suddenly homeless, standing outside in shock with nothing but the clothes we were wearing. We had been living in a peaceful cottage on a farm, and within hours it was gone.
I had been in touch with DEBRA since my daughter Lily was born, when I saw that her tiny thumb had turned black. In an instant I went from the joy of becoming a mother to the fear that something was terribly wrong. When we later learned she had dystrophic EB, my life shifted in ways I could never have predicted.
But it wasn’t until the fire that I realised just how extraordinary DEBRA really are.
Discovering DEBRA’s support
When I contacted the DEBRA EB Community Support Team, everything began moving at a pace I had never experienced before. It was as if a whole network of support sprang to life the moment they heard what had happened. They helped us apply for Disability Living Allowance (DLA) for Lily and Personal Independence Payment (PIP) for myself, guiding me through forms I couldn’t have faced alone. They arranged letters, supporting documents, and awareness material so every agency involved fully understood EB and our needs.
Suddenly housing, schools, and services were stepping up. We were referred to disability social services to ensure we would get the right kind of home going forward. When something was refused, DEBRA stepped in to challenge it. If we needed help, they organised it. When we felt lost, they reassured us. For the first time, we weren’t falling through the cracks. We were being supported, defended, and understood.
DEBRA didn’t just offer practical help – they helped rebuild our daily life. Lily received specialist sheepskins, adaptive clothing, and direct training was offered to her school so staff could properly understand how to care for her skin. Great Ormond Street Hospital provided tailored sessions and outreach clinics, giving families like ours a chance to connect, learn, laugh, and cry together. When the heat became unbearable, DEBRA delivered a cooling fan.
And when Lily needed a wheelchair, DEBRA helped eliminate the endless maze of paperwork so she could receive her electric adaptive chair. She is so excited for the independence it will give her; whole days out, full participation, and a freedom she has never had before.
Support for me as a parent
One of the most unexpected gifts DEBRA gave me was support for me as a single parent. They arranged psychotherapy, online clinics with EB-trained teams, and access to support groups – including the brilliant new men’s chat group which has already made a huge difference to many families. They have become a place where I no longer have to hide my struggles or pretend everything is fine. I can be honest, and I am met with understanding every time.
But the thing that has stayed with me the most is something very simple. At the end of our calls, our EB Community Support Team Area Manager always says:
“Just give me a ring.”
It’s such a small sentence, but it has brought me to tears more times than I can count. For someone who grew up ashamed of my skin, hiding my pain, and never asking for help, hearing those words means the world. It reminds me that we now have a support system for life. A real one.
The EB community
The DEBRA community is full of the most inspiring people I’ve ever met. At Members’ Weekends and clinics, you realise you don’t have to be embarrassed. You don’t have to hide. You are accepted completely, without question. I have never felt so supported, and Lily has never felt so understood.
DEBRA have rebuilt our lives from the ashes. They have fought for us, held us, guided us, and celebrated every milestone with us. Their support is unbridled, unwavering, and deeply human.
They are not just a charity to us – they are family. And I know that no matter what challenges lie ahead, we will never face them alone.
Katie Archer, DEBRA member
