Epidermolysis Bullosa Awareness �

When Aiden was born, we had never heard of Epidermolysis Bullosa (EB). The condition causes severe blistering and shearing of the skin. Aiden’s first blisters appeared when he was just five days old. Our doctors here were at a loss. He was treated with antibiotics because they believed it was an infection.

We eventually got an appointment with a specialist dermatologist when he was eight months old. A skin punch biopsy was taken from his hand, and that’s when the diagnosis of EB was confirmed. The doctor told us that he would not survive.

What does “equity” mean in your story?

The hardest part of our journey, as a parent and primary caregiver, has been accessing doctors with experience and specialised wound dressings. Rare Diseases SA connected us with DebraSA—a small group of dedicated people who advocate, guide, and educate. They are an incredible group of women. For me, they have been a real lifeline. We can share tips, talk about what works, and support one another through the hardest days.

Day‑to‑Day Life

Aiden’s daily life is incredibly difficult. He doesn’t sleep much because his skin is constantly irritated. His condition affects his entire body. Every day involves wound care, protecting his fragile skin, and managing the constant itch and pain. Something as simple as holding a pen or sitting on a school chair can be painful. He has endured several corneal abrasions.

There is no treatment or cure.

He wears a modified school uniform and different shoes to keep him as comfortable as possible. He cannot participate in contact sports like rugby or cricket, but he does enjoy social tennis and golf. Aiden is also a competitive fly fisherman.

Hope and Strength

Aiden is remarkably resilient. Even when he has large open wounds and painful blisters, he never gives up. He lives his life to the fullest. We have deep faith in God, and Aiden truly believes he is special for a reason.

He finds fly tying incredibly relaxing—if he is having a difficult day, you will find him in his air‑conditioned room creating flies with absolute focus and patience. He is my inspiration and my strength.

What would you like others to understand about rare diseases?

Days and nights are hard. His pain is real—even if you cannot see it, he feels it every moment.

We are extremely blessed to live in a small, supportive community. Their understanding has made decisions around Aiden’s daily challenges easier—at school, at home, and in all the small adjustments that help keep him comfortable.