The story of Ethan
Ethan (6), was born with the rare skin condition, epidermolysis bullosa (EB), his skin is as vulnerable as the wings of a butterfly and with a slightest touch causes blisters.
We live in Aruba, a small sunny Island in the Caribbean. Ethan is the only child in Aruba with this disease and the necessary knowledge was therefore lacking. That is why we go to the Netherland for checkups every two years. Because we live on a sunny, warm, island we consider the weather. That is why Ethan plays early in the morning and late evening outside, because then it is cool.
Wound care remains the difficult part of this journey; it takes about one and a half to two and a half hour. During good days without struggle, we are in one hour ready.
Ethan’s condition goes up and down. Sometimes the spots are stable, sometimes they suddenly open again or infected and very painful. I let him grow up as normal as possible. Each time he want to do extreme activities, I remind him that he could get blisters. That is how he learns that he is different and he must be careful.
Ethan has teach me to be patient, never to give up and to enjoy every moment. He is in constant pain every day, especially during care. However, after that he is back to his old self, with that big beautiful smile. When I see it, I forget my own issues.”