Zuzia - a little, delicate blonde. She loves reading books and drawing. Her optimism infects the world, her laughter spreads all over the house, despite the fact that every day she experiences great pain. She dreams of having life which does not differ from that of other children. She dreams of being healthy.
She was born and it already hurt. Not a hand or a leg but everything. As if somebody poured boiling water at her. I remember her face a few seconds after the birth and this constant crying. She cried when she was measured, weighed and examined. She cried when I got her wrapped into a napkin to hug her. The more I hugged her the more she cried. How could I know that my touch hurt her so much? How could I know that personally I added her new wounds and blisters? Doctors already knew that something was wrong but didn’t show anything. Until the evening the first news came to my ears…
Zuzia suffers from EB. Epidermolysis Bullosa is an inherited connective tissue disease causing blisters in the skin. The disease is incurable, lasting until the end of life. It causes wounds and blisters all over the body, including eyes, esophagus, intestines – everywhere. The wounds don’t heal for several years. The skin doesn’t stretch and splits. The body doesn’t keep up regenerating and more and more new wounds appear. The reason of this state is a failure in collagen gene type VII which is responsible for creating collagen in the skin. The skin isn’t cohesive and its layers separate from each other. To cut a long story short: Zuzia doesn’t have glue in her skin. Someone has written that one can live with this disease. How to live, it’s not possible! How can she live like that? We didn’t know. We were scared.
Pain. The biggest enemy of a human being. It can break even the strongest. Zuzia experiences physical pain and we, her parents, psychological one. 70% of Zuzia’s body is covered in wounds. Children with EB are called butterfly children because their skin is as delicate as butterfly’s wings. When you touch it it falls apart. They are also called Job’s children as suffering accompanies them all the time. Kilometers of bandages, liters of ointment, kilograms of dressings. The body is always wrapped in bandages that must be changed several times a day. There were times when Zuzia only cried, now she cries and goes crazy. In the quiet house Zuzia’s screams spread everywhere like echo. She’s in pain every day. One day the pain is smaller, the other bigger. It accompanies her in the morning, during the day, at night, when she eats, sits, walks and sleeps. Not many people could deal with pain as well as Zuzia does but we can’t cheat ourselves. Zuzia can’t just drink a magic syrup or take a miraculous drug and next day she will be healthy. The disease doesn’t follow any rules, doesn’t give any days off, doesn’t have Christmas nor just goes to sleep. It is present all the time. However, we thank God every day that she is with us. But we will never accept the pain. Sometimes pain is so strong that even Zuzia can’t stand it. Then she cries and screams. We are helpless. All dressings may only protect the skin for a short time but they will not treat Zuzia. Zuza has the power of a several-thousand army. She doesn’t complain, doesn’t show that something is wrong. How much strength is needed to draw, learn, read and play with a sister despite all this pain? When I tell her to have a rest she says: "When can I do all these things if I feel pain all the time? Should I lie and do nothing?"
Zuzia’s disease isn’t well known by doctors, let alone people who meet Zuzia. A lot of people are worried that this mysterious disease is contagious. Many believe that I didn’t take care of her and she was burned so badly, that I didn’t take care of myself when I was pregnant, that probably our family is pathological... This disease can’t be hidden from people’s eyes. Everybody may see wounds, blisters, dressings soaked with blood. Some lower their eyes, others stare stubbornly. Please, think what I should tell a child who asks: "Mummy, why is this Mr/Ms staring at me? Am I dirty?"