Life must go on! Most of us can’t imagine our life full of pain and suffering Being diagnosed by birth with a rare genetic disorder Eugen Brad channeled all his energy in fighting it The suffering made him stronger, so he stared to fight for the life of others who share the same destiny with him – having the same disease. He is thankful to God for every moment he is given because it could be his last. For him “Life must go on”, thanks to the efforts and the dreams which are waiting to come true. He never dreamed of anything else but to get rid of the pain. He tried to forget it, and channel his attention upon other things. Eugen Brad is a young 29 year old man from Chisinau who learned to fight with the suffering. He tried various methods to face his struggle, out of which the most efficient were proven to be the trust and love. Eugen: I always believed that people are very bad maybe even now you can’t say that everyone is good. However I was envisioning that everyone was bad and no one is good. I was very upset (saddened) in my life.No matter who I was looking at, I wasn’t considered as a person (human being). Behind my native home walls the children and neighbors around me would consider me an (urod) imbecile, They could even stone(throw stones at me) me. However, when my father was working as a driver on a bus line I used to drive along. Then I realized that the society is not that bad and was not behaving all that badly towards me. I was collecting the money for the bus – so this way my complex (?) disappeared. Maybe a healthy person couldn’t bear what I am going through. . I don’t feel a small pain as much … I am making a comparison with other people with my diseases which always use pain relievers. . I got used to my life and honestly I don’t think if given the chance I would trade it for anything else. Maybe because being a healthy person you tend to overlook a lot of pain and struggle. You become more selfish and many times become …..an alcoholic, a drug addict or a smoker etc.. Eugen doesn’t remember himself other than sick. Weakened, with wounds that were becoming a lot more painful. With every bad look he would get, the bad thoughts would have not given him chances to live. He always was thankful for every single good thing that would happen to him. This way he gained the power to move on. Eugen: When so many bad things are happening to you, you are surrounded by fear of how it all can happen to you and it makes you think why were you born to this world to begin with. Then it eases up on you when you think – it is really not that bad now – I had to go through a lot worse before. I think this gives me power to move on. And I am thinking yes it hurts now but my problem now is not as big as what it used to be. . I had a complex regarding my disorder for many years – however around 15-17 years I started to get used to it and don’t even notice it as much. However I always had problems with people being mean to me, talking badly toward me. Mother: I always tended to take care of him (defend him) would tell people not to steer at him. Basically he never had friends, mostly our relatives were while small kids they used to come and be close with Eugen so didn’t feel the vacuum of not having friends. Father: Sometimes without a desire you start to cry. Eugen: When you cry always it tends to get better afterwards. As I said looking back through my entire struggle I realize that is really not that bad right now as it was. Mother: Usually kids with these disease don’t make it passed age of 5 years old and there is no prognosis – there is nothing to give us hope out there. When Eygen was 6 y.o. I started to teach him to read using “The Bible for Kids” and this is how we started to read the Bible together. And sincerely when I am praying I am praying – God give him strength and don’t take him from me. The disease he has is called Epidermolysis Bullosa. Or it is also called the “Butterfly” disease. It’s a genetic disorder and it affects the layers of the skin. Eugen has one of the most complicated forms. This is what makes even the doctors wonder. The Dermatologist: The form of disease that Eugen has is profound and recessive with appearance of many spontaneous blisters, with mutilations, with stenosis of the esophagus and larynges and an eventual secondary infection that in any moment can compromise his wellbeing. Usually the prognostics are poor. This is thankfully to his parents that never gave up on him and hopefully he’s got some help from the medical staff as well – lets hope he will be able to face it farther on.It is unbelievable he made it so far and still going strong at the age of 30 y.o. Mother: Doctors told me to give up on him and leave him behind, in the hospital, because he won’t live long. I couldn’t do it I couldn’t leave my child behind. Eugen started to talk at 7-8 months old and he was very loud and how could I leave him so he would say “Mother Tania where are you?” Being a small child Eugen proved having a strong character and courage. Even though he couldn’t manage much and he was answering aggressively to provocations his mother’s kindness helped him through with recovering. His parents love surrounded him and he never wanted to disappoint them! Eugen: I am thankful that I can eat on my own. My parents just have to give me and I can eat by myself and that since of age of 3 y.o. There was time I could button my own shirt. Till 9’th grade in school when my fingers weren’t as mutilated I could hold the pen and i could button myself down. There were mornings when my father was working outside and I would wake up and dress myself pants and shirts, especially in the summer and i would button myself and would come outside. My father would be very surprised as of how could I do all this on my own. But then I didn’t use to have as many wounds as now and I didn’t require as much bandages(ing) as now. At the age of 17 y.o. Eugen created his own business. He started to sell goods right in front of his parents’ house. Despite the bad looks and often times full of anger. With time he got peoples trust and more important he started to trust in his own power. He started to believe that he can succeed in anything if he really wants to achieve something. Eugen: At age of 17 and a half closer to 18 y.o. I decided to have something of my own, to have an occupation, a business or something. I was thinking that I don’t want to ask my parents for money when I want to get something i need. The things I was thinking about having weren’t that special, candy or anything sweet that I could afford on my own. During that time small businesses were popping up everywhere, small tables in front of people’s houses with candy So this is how 11 years ago I started and was making around 20-30 leis a day for myself. Afterwards I was dreaming of having a TV with a remote control because it was very hard for me to move around and switch the channels on my own. This is how I gathered the money and got my first TV and my life started to change. I started to have my suppliers, people with whom I had very good connections. Often times they were giving me produce on IOU’s This made me responsible knowing that I have a debt to pay, so I was more motivated to wake up in the morning and get to work. Sister: He really has a different way of looking at things. He has a different conception about life, I would say. However all the pain and struggle he went through made him stronger! Kind at his soul he has a terrific mind He never liked to be a victim. And even than when he was given money he wouldn’t be shy, he honestly believed that the shyness of the fake person has nothing to do with the good intentions of the good people that were trying to help him with all their hearts. Eugen: If a person would want to donate me money and would tell me keep this … For example a lady I gave her change from her 20 and she thought that she gave me 5 instead of 20 because it was night time. She was so honestly surprised I didn’t lie to her that she gave me the whole change back for myself. I don’t consider myself as a beggar, if someone gave me money this means I earned it. Eugen: I started my business with a table outside under the tree, I was selling there for 4-5 years. Then I could still stay on my own feet. Till the age of 22 I could do it all by myself pick my merchandise and sell it outside. I was selling there in rain or wind so my dad decided to build a shelter for me so I wouldn’t have to sell in those conditions and especially in winter time now I can set up a fire and stay and sell in warmth. That so I won’t be sitting without something to do at home. Usually the neighbors are my buyers. When strangers see and don’t quite know what this is turn around and say – Wow! What is this dude doing here? Well people are different so there’s nothing to do. Mother: He did it all on his own away from our knowledge. He knew that I was always thinking that my child has a disability and he would never be able to do anything at all. During those times that he started his business it was common for people to sit outside with a table and sell goods. So in our neighborhood there was a man who was selling as well. Eugen saw him and in his mind was contemplating his own business idea. Father: My wife when she saw him she wasn’t very happy for sure. Somehow she thought I allowed Eugen to do it. If I allow that and why did I allow it? She was thinking that Eugen and I were doing it without her notice. Ludmila Vasilita, neighbor: While being a little child with big problems he was always a fighter. . In such harsh times and especially in our county it is very hard to exist. At the age of 3 years Eugens fingers started to merge, he however had a chance to write for a short period. Even though the writing was causing him infernal pains, he was doing it with a great attention to details. L. V. Neighbor: He was a great, hardworking student, he was always preparing his homework. I was going through his notebooks and everything was very calligraphically written. Mother: Eugen didn’t attend the school the teachers were visiting him at home. And usually when they were preparing the homework Eugen always had questions and if he would not like the answers or he wouldn’t understand or why it is so he would be very insistent to have it explained. I would get in between the two and tell Eugen you can’t behave like that. He studied at home the basic subjects, all the other knowledge he obtained through experience. He loved geography and history and when he was a teenager he was interested in politics. He had never a chance to become a geography teacher or a historian, however he had all the tools to succeed. He needed an idea which took shape is his mind a year ago today. Eugen: I have a motto “What is mine is set aside and what is not I will take it by force!” it defines me I am a “go getter”! I always had a plan in my life “to be thankful for today, to make plans for tomorrow and a bit for after tomorrow”. Even though every person has a plan to have something in a year, something else in 2, I can’t say I have made huge plans for the future – especially lately. But I was always happy with today, tomorrow and a bit with after tomorrow hoping that I will get to live it. Eugen created his own NGO “DEBRA MOLDOVA”. The aim of this organization is to help everyone sick with Epidermolysis Bullosa in Moldova Republic. In the country there are 46 sick people out of which 6 are in a serious condition. Dermatologist: The disorder is a genetic one, it is coded inside the genes and it is inherited through different genealogic ways. There are different cases when this disorder being inherited produces a lighter disease – being its dominant form. Or in a recessive forms when inherited it gives way to a very serious painful disease. All forms of EB are expressing themselves right after the birth or during first year of life. In dependency of how serious is this disease there are blisters popping out on the skin or after a trauma, besides there are lethal forms of EB when the child dies at birth or in few days after birth. I really want “DEBRA MOLDOVA” not only to be open and exist out there but to be very well known in Moldova Republic, so that we not only be known of but also have support and be able to help more people like that (struggling with this disease). Eugen knows what are the necessities of every member one of the biggest being the modern Dressings, that would offer a quality treatment of the skin. Eugen is changing his dressing twice a day and this only thanks to the help from the abroad. This is my daily routine, like a soldier who wakes up every morning at 6 so am I. I know that I have to be up at 8 -9 to get my dressing done. It’s unfortunate it takes time from my parents to do it, if I could I would do it myself. Many of his acquaintances never had a chance at this dressings and ointments and Eugen is always trying new ways to get them as well for himself as for the other sick whom in Moldova are left to struggle on their own. I have here some dressings for him, you will decide which one will be better for him. How do you treat his skin? Eugen: You buy it? Larisa Strainu: Yes! Eugen : Why won’t you dress all his fingers separately? Larisa Strainu: He won’t stay. It hurts him. Larisa Strainu: We contacted Mr. Eugen to give us advice on how to get dressings and he helped us because no one else would understand. Otherwise I don’t know what we are going to do all these treatments are extremely expensive! Danut Strainu is one of 20 beneficiaries who are receiving help from Eugen. He is the 3’rd child in the family and the only one with EB. Even though he was step aside from death first years after his birth his parents fought for his life. Seing Eugen being so active and always involved, Larisa Strainu is hoping that her son will be as strong. Eugen: Because there is no good treatment and good care most patients don’t get to live till the age of 20 y.o. This year a girl with EB was born at the “Centrul mamei si copilului”. Every week Eugen makes a long trip to offer help to those who suffer from the same disease His team is his parents and his sister Ecaterina. After a year of life his organization didn’t get any kind of sponsorship. He is helped by relatives and especially his fiends whom he made through a social network. Eugen: He helped me many times with medicine teardrops and dressings from Canada. Eugen: This lady helped me with website promotion and publicity by paying money on a social network website. Mother: He had many friends that died from this disease. It was hard for me to fight, I was crying, I didn’t know how to bandage him. He had many wounds as you know how little kids are very active. All his skin was tearing apart on his legs. These expensive dressings we are washing them, which you are not supposed to do. Germans recommended us to use them for 2 to 3 days and through them away. When we took from here the dressings donated to us by somebody and they took them out and looked at them they said do we wash them or why do they look so bad?And I would say that there is nothing else we could do in Moldova they are not sold. Dermatologyst: This dressings are performing a barrier and an absorbent function as well as to facilitate the healing process. All patients with EB are by default disabled from childhood. We usually treat the symptoms because the treatment of the disease is almost impossible and requires a genetic therapy that we don’t have to offer in Moldova Republic. Eugen: I have to find myself who will bring them to me from one town to another to the train and then we meet the train here, it’s hard. Even abroad they say if there is an adequate treatment, even though the disease is still incurable, you can achieve a lot, you can still walk and avoid being reduced to wheelchair and find a job and live a decent close to a normal life. The biggest achievement of Eugen’s is not the fact that he inaugurated an organization nor the fact that he became financially independent despite his condition. Not even the fact that he made his dreams come true by getting himself a Computer or a TV set with a remote control. A year ago today Eugen started a campaign to get to Germany into a genetic clinic, he called every TV agency, Newspaper and Radio they wrote about him, people found out about his destiny. Eugen: there was a campaign to go to Germany so I had to constantly write letters to go knock from door to door, than I founded the NGO than again I had to run, besides wanting to get something done for myself I was trying to get things done for others. So it could be little things for some documents but often times you have to return to the same place for 2-3 times. And now again I will have to go to the Justice Ministry so I am looking for a person with judicial knowledge to help me. There was organized a Charity Event to help Eugen, he needed 18.000 euros for consultations and professional procedures. With the help of Mass-Media he only gathered 8.000 euros and the rest of the money were offered to him by the Ministry of Health. The program of this young guy on a wheelchair who is struggling with one of the most serious genetic disorders is very busy. Twice a moth he has a meeting at the Ministry of Health. On the daily basis he speaks to doctors and his 20 beneficiaries from his NGO that he created. Eugen involved himself in a fight for the rights of every person that struggles with EB in Moldova Republic. In case he will no longer be among the living ones he asked his mother to be in charge. Secretary: I have someone who would like to discuss in person with you! Eugen: Brad Eugen “DEBRA MOLDOVA” Secretary: Brat Eugen? Eugen: Brad Eugen! Eugen: I was usually coming without an appointment. I need to ask him 2 questions. I won’t keep him long. After several tens of minutes of waiting a representative from the Ministry came to talk to us and told us that can’t give us an answer. The discussion was limited to registration of personal information. Eugen: Brad Eugeniu. The rep: Bradu Eugeniu? Eugen: Brad without U. Eugen. And besides this question… The Rep: What association? Eugen: “DEBRA MOLDOVA”. Eugen: We collaborate so that the Ministry would introduce in the country for sick people like us dressings of “Lipitel” and “Melitel?????” kind, because we don’t have them in Moldova and they sell them only in Europe. The decision …. From February this year, it is 6 months now and I would like to know what’s the procedure and for how long we still have to wait? A half an hour passed by and Eugen didn’t get any information. Disappointed he started to move towards his car with his dad, they were almost gone, when the Ministry Representative told them that the dressings were already purchased and will be distributed later. Eugen: I was here for the first time at the beginning of February and I met Mr. Minister and raised the question for “DEBRA MOLDOVA”. Afterwards I raised the question regarding myself. Than Mr Minister first thing he did, he really helped me with going to Germany by donating me 18.000 euro’s. When my mother went to the second floor to the Mr. Minister and with tears in her eyes asked him for help, than he in 10 minutes called a meeting and in 3 days’ time I was given the money The same with the dressing problem – until I come and start digging for answers, make some noise and ask some questions nothing is being done. He is used to fight with his teeth for what he wants to achieve, for a chance to life. Too few did it before him and maybe no one of those who share the same struggle as he does. Reporter : Do you think about death? Eugen: Yes! Very often! Very often and this is what made me be afraid to stay on my own at home, I can’t stay all by myself. Or the fear that I will get ill and there will be no one to give me my medicine. Or that I won’t be able to call someone from outside. But this happened suddenly since I was 22 years old, when my disease got worse. I usually cry at night or maybe in my soul but rarely with tears. However I can be crying now but in 30 min I could be laughing out loud for almost nothing. I love life and they say if you love life it’s because you love God! The care that he has for others and awarness that he has for his own state of health are making the days and nights go by almost unnoticed. Any change as small as it would be causes him stress and he is thinking in looking for how to solve it. Eugen: Yes. Make sure they are good ones and won’t damage the liver Today as in many other days Eugen didn’t get a clear answer from the doctors. He is already used with theyr dismissive attitude and incompetence regarding his illness. Eugen: I was here for the first time in March this year asking them to make me a referral for my trip to Germany which afterwards failed. Now I am going to give them my Hospital card and tell them that I had a blood (transfusion) and see what will they recommended me. Eugen: Good morning Mrs. Tatiana. Mrs. Tatiana. Mrs. Tatiana: Yes Eygen: I ‘ve got a blood transfusion Eugen: I came to the Clinic and as usual I am leaving empty-handed! They closed the door in my nose and they didn’t solve anything. They were very upset that we came without letting them know. No matter where I go they tell me go to the Clinic talk to them and they will help you. So this is not the first time I am realizing that the Clinic has nothing to help me with, a sick person like me. Today Eugen doesn’t question the day of tomorrow. He went through too many provocations to think about death. Even though sometimes he is thinking that can’t move on and that the death is still reminding him of its(her)self. Eugen: I am in constant quest, always new thoughts, sometimes at night when you can’t sleep because of the pain or because of the insomnia and then during the day time you fall and can’t move on and say yes I will go and sleep. Otherwise I can’t sleep during day time. Maybe because I am afraid I will lose years of out of my life. I don’t know. There are moments I am thinking there is no much time left for me. The excruciating pains that he goes through daily formed his strong character and sharpened his mind. Every moment of his life is (dedicat) to the fight for life. For a new definition of today! The Dermatologist: The deeper is the wound the more nervous it is and causes higher excruciating pains. Mother: It is a very hard life in pain and struggle which even I couldn’t stop. I was many times asking for doctors help. Father: With God’s will. We are alive today but we don’t know about tomorrow. And so is Eugen. He is alive today. He is fighting and we are but who knows. When Eugen was 12 his parents decided to have another child. The doctors tried to convince them not to do it. They didn’t listen to the doctors advices. Ecaterina was born. She is a very good friend to Eugen. Ecaterina: When I have something tough on my soul for example someone offended me or I had some struggle I would tell him for example when my mother is not home and I would ask him how to do something better and he would tell me even though not always I would do as I am advised He didn’t have an efficient medical support that he needed, as well as much love or understanding from the eyes of people around him. With years he was a witness of his own disability but he never gave up. In every moment Eugen Brad is fighting death. He won this fight so many times as no one else before him could do.