Luke

Luke’s story, by his mum Claire

Luke is 12 and has Recessive Dystrophic Epidermolysis Bullosa (RDEB).

We found out that Luke had EB when he was born missing the skin on his left leg. The first visitors we had to the hospital were the EB nurses from Great Ormond Street who came to show us how to dress his wounds, and how to pick him up safely without injuring his fragile skin.

Since then we have carried out dressing changes almost every day for the last 12 years.

On school days Luke wakes up at 6:10 to have his medicines and eat breakfast. We then work together, non stop, to get him ready for school. His dressings are removed, wounds inspected and cleaned, blisters burst, and raw skin covered, patched up and protected with new dressings from his neck to his toes.

As soon as we finish we race him out the house for school. Even when he struggles to manage the pain of blisters and raw skin on his feet enough to put his shoes on he will limp out the door with a spring in his step, eager to meet up with his friends. He puts up with incredible levels of pain every day to be able to do the activities everyone else takes for granted.

His brother and sister love him dearly; his brother will often carry his bag to school for him, without saying a word. His little sister will always ask questions about which doctors we are visiting at the hospital, and we reassure her that it’s just a check up and we’ll be home at the end of the day. They each remember times when Luke has been unwell and had to be taken to hospital overnight, or has had to stay in hospital for a procedure. These experiences are considered normal now, they’ve happened so many times before.

For Luke, and our family, living a life with EB is the norm. Luke’s resilience and drive to join in are extraordinary; few people he knows realise what he goes through in order to turn up to school each day. As a family we are fiercely proud of his achievements and of the young man he is becoming.

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