Akeelah's story

Venitia Sorhaindo's daughter Akeelah has EB simplex. She talked to DebRA about the challenges of caring for a baby with the condition

As soon as Akeelah was born, I knew there was something wrong. When she cried her voice was really deep because of the blisters in her throat. I found it hard to get people to take me seriously. When I took her back to the hospital two weeks later, they accused me of burning her with cigarettes. It was so upsetting.

They kept her in overnight. When the skin specialist saw her, he identified the condition immediately and contacted Great Ormond Street. I'd seen the TV programme about the boy whose skin fell off, but I never thought EB was something that would affect me. For the first 12 weeks of Akeelah's life, I was in a bit of a state of shock. I couldn't lance her blisters or change her dressings. Jackie Denyer, the DebRA EB Nurse Consultant showed me how to do all that - in fact, she pretty much forced me!

Jackie came to see me at home every two weeks to start off with. Now it's every two months. She'll stay for a couple of hours. Now I'm confident about doing the dressings myself, she helps with things like benefit claim forms. I'm living with my mum at the moment, and Jackie and the rest of the team at Great Ormond Street are trying to help me get a new place to live. I trust her completely. I can call her whenever I need to, late at night or early in the morning, whenever I'm worried about Akeelah or I need some advice. She is the only other person I trust with my daughter's life.

I've got into a routine now of looking after Akeelah. Some days I only have to lance three or four blisters; other days it'll be 20 or 30. We get up at about 7am, and I'm caring for her constantly until she falls asleep. She normally wakes up three or four times in the night too, and of course I have to get up with her. Akeelah struggles to feed and hasn't gained much weight in the past year. It is so stressful seeing your child not eat. She can only wear cotton, and I have to turn all her things inside out so the seams don't rub.

It's hard work looking after her and at times it's heart-breaking. Akeelah's only 22 months old but she's already had MRSA and had to spend a month in hospital. She was vomiting up everything I gave her, and she stopped breathing a couple of times. That's really frightening. But she's such a bright, happy child and my life is so much better since I had her. Just like any other parent, I feel very proud of my daughter.

Before I had Akeelah, I was at art college. That's something I'd like to get involved in again. I've taken her into the college with me three times now. I do some of my work while she's asleep, and have a chat to people. It's something I'd like to get involved in again when she gets a bit older. For now, though, my main priority is to find somewhere for us to live. I want us to be a proper, independent family.