“She’s a naughty little girl who loves to laugh”: says Sarah, “Always on the move, a little daredevil, she behaves like a completely classic child. Yet as soon as I had her in my arms at birth, I immediately noticed that she had a finger devoid of skin. And then she had sores on her head.”
Initially, the doctors were unsure what she had, so she was taken to intensive care. So they very quickly investigated and performed biopsies in his skin before sending them to the specialized Necker hospital in Paris. The diagnosis came the following week. It’s a recessive dystrophic epidermolysis bullosa (EB)a very serious form of the disease that affects the deeper layers of the skin.
Angèle’s skin is so fragile because it lacks a protein, if you rub it too hard, it tears off. “For us, the world has collapsed”: remembers Sarah, “The prognosis was not good because the disease was very aggressive. We were told that she would not live very long, that her fingers would merge, that she might be in a wheelchair, that she would have a growth retardation (..) We said to ourselves, what hope do we have left?
