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…
When I was a teenager I watched a television documentary about a boy suffering from EB. The disease was incorrectly called pemphigus. The view of a screaming little boy who had wounds all over his body often appeared in my bad dreams. I thought: “God I can’t even imagine his suffering, I would never deal with anything like that. Fortunately, the disease is very rare.” I would have never thought that my own child would be a mirror reflection of this suffering boy… I reminded the program when I got to know that Zuzia has EB. I kept repeating like mantra: “that will not be the same, that will not be the same”. I asked a doctor on call: „Doctor, but it isn’t pemphigus? I saw a programme….” The doctor said: “No, it isn’t pemphigus, it’s Epidermolysis Bullosa.” Oh! Thank God it’s only „Bullosa”, because if it was pemphigus I wouldn’t know what to do. The doctor lowered his eyes, the silence fell. He didn’t have enough courage to tell me the truth.
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? “ One day in a shop I was accosted by a stranger. „A mum of this ill child? – He stated rather than asked. “What a misfortune.” I only looked at him, speachless. And he kept talking: „This is you, I recognize, I’m so sorry about such a misfortune, such a punishment from God.” “What misfortune do you mean?”, I asked. My blood pressure jumped to 200. „I commiserate with you over your child. Such a punishment, such a punishment.” I couldn’t bear it and exclaimed to him as goodbye: “I don’t need your sympathy, either my daughter!”
For seven years I have been looking at my daughter who was crying, resigned, constantly asking why she was ill, if she would be healthy one day and I have felt extreme emotions. How much more pain and suffering will her extremely exhausted body bear? I was only looking and I could do nothing more than just fight with the disease every single day, with the disease that is a losing battle. Till one day in March 2015… when at night I received an e-mail from the USA. With this message I also received hope that Zuzia can be cured. In 2008 at the University of Minnesota doctors discovered that marrow and stem cells transplant at patients with EB leads to significant improvement of their state of health. Patients’ skin starts to produce collagen and wounds start to heal, a digestive system starts to work normally. Treatment is very successful, several children with EB have already been cured. After analyzing medical documents doctors from the University initially qualified Zuzia for the treatment project. We received a financial estimate amounts to almost $ 1,5 million USD. To start treating Zuzia we need to pay a deposit of $ 1 million USD, the rest of the costs should be paid within the year. For this sum of money we may buy health for Zuzia, bribe pain and suffering. If we succeed, Zuzia will be the first person from Poland who will get this treatment. For us only one day without the disease would be a miracle, let alone whole life… We know that our task is extremely difficult. The word “extremely” doesn’t reflect the scale of our challenge. So far it has been the biggest task in our life but we’ll do our best to make the impossible possible. If Zuzia believes that everything is possible, it is true! If she believes that one day she will be healthy, so do we! We will move heaven and earth and we will collect this money. It is our lifetime goal. To give Zuzia new “healthy” life.
You have no idea how lucky you are not suffering from EB. Constant pain as if you scalded with boiling water isn’t your everyday experience. Your skin isn’t covered in blisters and wounds which can’t be healed for years. Nobody will turn their head when they see you and nobody will think that your mother didn’t care of you and you scalded yourself. Your arms and legs aren’t deformed, your fingers aren’t joint together and you have nails on them. When you were a child your parents could have hugged you as much as they wanted without threat that they could hurt you and peel off your skin. Your esophagus isn’t narrowed, you can eat everything and you don’t have to ask how the food tastes. You don’t need to change your clothes because they stick to your wounds. You don’t panic when you are about to have a bath, because water doesn’t hurt you. Think about your everyday problems. Have you done it yet? Now think about Zuzia, about her everyday challenges. How small our problems are, aren’t they? And Zuzia smiles, despite the pain which accompanies EB. She says that she is happy and she will recover! And that she will eat a pork chop one day! Dear Zuzia, we will do everything to make your dreams come true!
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