"Our boy Oliver was born with dystrophic epidermolysis bullosa (DEB), one of the most severe forms of EB that causes incredibly painful blisters both externally and internally.

Life was tough for him, and for us as a family, but he never let EB define who he was, he enjoyed life despite having EB, he had a wonderful smile and a wicked sense of humour. He loved school and made it through college and university. Eventually though, his EB worsened.

Oliver battled like hell to beat EB, but it ravaged him; it took away his hair, his beautiful blue eyes, and his body, but it never took his spirit or his mind, he just kept battling on, “just get on with it”, is what he always said, stoic to the end!

On December 21st, 2021, Oliver eventually lost his battle with EB and passed away at the age of 32 from an aggressive form of skin cancer that affects many people with DEB. Now the memories of our time together are the most precious things we have left.

As a family we will do everything in our power to raise awareness of this cruel condition, we will fight it to the very end and support DEBRA to raise the funding that is so desperately needed. Together we will find the treatments and cures that will ensure that no one and no family must ever live with the cruelty of EB again.

Thank you for reading and please join us in supporting DEBRA so that one day people with EB will be able to live a life free of pain.

We will do this in our brave boy’s memory, our soldier Oliver. We miss you."

The Thomas Family


There is hope for people living with EB.

Drug repurposing holds the key to unlocking effective treatments which could slow, stop, or reverse the progression of EB.

With your help we can find life-changing treatments within 2-3 years that will help stop the pain of EB.

Watch this video to learn more about EB and please donate today to our 'A Life Free of Pain' appeal. You can make a difference. 


Donate now