Hiba’s story in her own words

In 2008, my mum was pregnant with me, Hiba. My mum was really happy to have me. The doctors, at the beginning, said I was OK like any other normal baby, but when I was born everyone was surprised. My mum fainted, and my dad was really sad because they didn’t expect this to happen to me.

My mum and my dad were so excited when they first showed me how to walk. One day I learned how to walk by myself, but my feet were the sorest part of my body. I surprised my mum that day. When I went to school, my mum spoke to the doctor and the doctor went and explained that EB is not contagious. I feel really happy when I go to school. I really enjoy being there.

My fingers closed, and I had an operation on my hands. Four months later they were closed again. I had another operation on my throat because I couldn't swallow food or water. It was very helpful, but it started closing again. I have a gastronomy button now, a tube that goes in your stomach, and you give food or drinks with a syringe. I also use it to drink my medicines because they taste disgusting!

My feet were really swollen and really sore. It was also very itchy. Everyone was telling me to stop itching because you’re going to make it worse, but it was really hard to ignore the itch. Whenever we hear there is a medicine to reduce the pain and the itch, we get very excited. I wish other people who don’t have EB knew what it feels like. The doctors are trying to make things better, but EB is really hard for everyone. There’s a lot of people that have helped us in my life. I really to want to thank them. I try my best to be brave. We need to be brave in this world.

My mum keeps an eye on me. I tell my mum, mum don’t worry I’m okay, I’m fine, but she said no, I need to take care of you. My mum tells me that I am very strong, but the truth is that I’m strong because of her. I really love my mum, she is the best person in the world.

When I grow up, I want to be a scientist to make new medicines for children that have illnesses like mine. Hopefully I will cure EB. I know it's not impossible. Everything is possible.

DEBRA, thank you so much for helping me and my whole family. I can’t describe how thankful we are. 😊❤🙏

 

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Hiba sadly died aged 14 on Saturday 11th February 2023 surrounded by her family who loved her so dearly.

Hiba had recessive dystrophic epidermolysis bullosa (EB). 

DEBRA's community support team offers practical and emotional support for people who have lost a loved one due to EB. Please email [email protected] if you want to contact our team.

Support for families who have lost a child is also available through Child Bereavement UK.