The story of ANGELIQUE
Imagine a child who couldn’t eat what he likes.
Imagine a child who couldn’t play without taking incredible risks.
Imagine a child who couldn’t dress the way he wants to dress.
Imagine a child whose clothes are bandages.
Imagine a child who should never walk barefoot.
Imagine a child who would have bubbles as daily companions…
Bubbles that would damage him a little more each day by causing
burns and intense pain on his skin.
Imagine that this child has a rare genetic disease and
that his life is a constant struggle .
Butterfly Children don’t need to imagine all this: they live it!
This terrible disease that forces us, parents, to become real nurses is called Epidermolysis Bullosa (or EB).
Their skin is as fragile as a butterfly wing. Their body is covered with dressings.
Our only hope : find a cure
*Find others with EB on RareConnect, the online platform for people affected by rare diseases