Anne, Christopher Robin and many others ... ..- children as delicate and fragile as butterfly wings. Called "Children of butterflies". Grappling with a rare and extremely painful disease epidermolysis bullosa, epidermolysis bullosa (EB). Smiling despite the terrible pain that does not leave them even for a moment. Children who want to live like their healthy peers want to run, play soccer, draw, go to pre-school in the future to study, start a family and live like the rest of us. For some of them are dreams that never come true. Epidermolysis bullosa is a rare and cruel disease that affects not only the skin but the whole body. She makes their body is covered with sores. Some goy in their place created another.
In Poland affected by this disease is about 350 people, of which more than 80% require a permanent wound care, special nutrition rehabilitation. Every year, unfortunately born children who are already at birth require proper care and their parents support that will help measure the suffering of their baby. Monthly costs as dressings and specialized means for skin care costs about 2000 zł per patient. And this is not the end ... .. With age, more and more confined disease. Overgrowing the spaces between the fingers make hands and feet look completely different than ours healthy: there are no sticks, only one compact mass, where it is difficult to maintain a spoon, a pen, crayon, it is difficult to dress yourself, it's hard to do a few steps.
Can I help? Daily rehabilitation is able to limit the negative effects of the disease. Problem? Of course, the cost of which is an additional burden on the family budget by a further minimum of 1500 zł. And that is not all, are also needed psychological support, education, social and vocational activation. But let's start small - great things. We need to raise money for rehabilitation holiday for our children, we will arrange for them to consult a professional medical staff: nurses, doctors, dentist, ophthalmologist, dermatologist, dietitian, psychologist. The cost of one of a stay is 70 thousand. respectively. Rehabilitation and ensure access to effective in this disease dressings, ointments, bandages, etc .. and allowances for all pupils throughout the year. 500000 is a gift that does not heal, but it will help to live with dignity and without pain.