Gabrielius’ morning begins before 7AM, while he is still asleep. We start by changing the dressings on his legs. When he wakes up, we continue on the rest of the body. Gabrielius eats his breakfast slowly and carefully due to his sore mouth and narrow throat. Luckily his school is just two minutes away, otherwise he’d be late every day.
Most of the affected areas are on Gabrielius’ feet, knees, hands and elbows. Usually his feet are too sore to wear shoes and he is limping. Most of the time his fingers have blisters or wounds, so it is very hard to play, write or draw. Because of constant healing skin, he eats very often and very slowly. Gabrielius usually has 4-5 regular check-ups a year, and a few unplanned visits to GOSH, as well as monthly visits to the GP.
People are curious to know what happened to him and usually they think he has eczema, but we always try to explain his condition.
Gabrielius started school last September. Even though he is an excellent learner he is not very keen to go, because his daily medical routine, which takes 3 to 4 hours every day, means he misses his playtime. We can understand his complaints because his early childhood started with pain and lots of restrictions.
Gabrielius is always warning kids around him to be very careful with him, because his skin is very fragile. He’s a very sociable child and loves to play with other children, but only in a small group. He is always very cautious and knows his limits.
At the moment Gabrielius’ favourite hobbies are playing with Lego, playing football and of course swimming in the sea. Lego is a big challenge for him, because it is really hard to separate blocks, so he always needs help. Playing football is only possible when his feet aren’t sore and then only with a very soft ball.
Gabrielius can eat only soft and well-balanced food, but like every child he wants to eat chocolates, sweets and some fast food. Sometimes we do treat him with the food he wants, even though he can only take a few bites!