We meet Joana, an old woman from mozambique, since the beginning of the DREAM story in Maputo. We in fact begun to attend her house – or rather her hut made of pipes and mud – from 2001, even before Machava opened, the first of the DREAM centres in Africa, when the Community of Sant’ Egidio didn’t yet have in Mozambique an outpatient clinic, or any laboratory …. The cures were not fully available, there was a lot of suffering and desperation, even if you could already breath that friendship between european volunteers and suffering africans that would have been then realized and improved with DREAM.
Firstly, I would like to thank the Community of Saint Egidio for giving me this opportunity to speak today on behalf of my fellow HIV activist; this is rare opportunity to stand in front thy delegates, for this am very thankful.
To begin with, my name is Jennie Mphande, born 34 years ago and a widow. I have a 14 year old daughter and I keep other 5 relatives .I got married in 1992 .My husband became sick towards the end 2000.We went to MACRO in January 2001 and we were both tested positive, unfortunately my husband died in 2004 of pneumonia.
Things started getting tough for me after his death, I had to move to the house he bought though not completely built. Towards the end of 2005, I got very sick which lead to my own dismissal from my work as a teacher in a certain private school. I knew even I become better, the owner will fire me.
I stayed at home without any thing to do and was being admitted in the hospital frequently and thought I will die, Especially when the best friend to my husband came with the advice and I quote: Why cant you go back to your home village you are just wasting your time living in town without a job and moreover you don’t have money, children are suffering, just sell your house, nowadays if the husband die next is the wife”Mlamu, umenewo ndi mtengano”
My neighbor, who happens to be a dream client was concerned with my sickness and advised me if we could go together to DREAM centre. It was my first time to hear about DREAM. When we arrived at DREAM I realize there was still hope for me. I still remember the warm welcome I received from an Italian dream staff, who asked me, how do you like your new family? And I answered what family? She said Dream. It is very good but I am not sure if it’s real. What do you mean? She continued, I said I have never seen this beautiful hospital just being offered to HIV patients.
The next appointment was that I was offered a job as an activist. Dream has been a blessing from God because when I came, the people were and are still eager to understand my HIV situation.
To work as an HIV activist has been my happiest moment. Dream has saved my life physically and socially, I am strong and able to take care of my family. Now I am contributing to save the lives of other patient’s am always happy to work with Dream and let the world know that we are children of God, who love and care for each other and that being HIV its not a death sentence, but the beginning of new life with a dream.
My gratitude will forever go to the community of Saint Egidio who trained me as V.C.T Counselor. My work is carried out in some antenatal units of the health centre. It is aimed at testing the pregnant women, preventing mother to child transmission. And after, the women are brought to the centre where are treated according to the protocol of dream. Throughout pregnancy, the contact with the dream is opportunity because women are encouraged to do a test with advice, encouragement and assurance they will receive treatment and in hope that they will have a health child free of HIV, often without support of the husband who might be dead, absent of work and many reasons.
My work is challenging especially to women who understand what dream is, when I talk to them and prefer coming to our center and get the therapy but they meet many hindrances like;
1. when they disclose their status to the husband some are divorced.
2. some are accused of bringing the virus into their marriage
3. some refuse to be tested in fear of their husband
4. some even stop taking the ARV therapy in fear of their husband this may result to poor adh
My experience with DREAM started out sadly and is now full of joy.
In 2002, my husband, the father of my daughter Albertina, died. Shortly afterwards, she started to feel ill too. Very ill. So much so, she stopped studying: she couldn’t even walk anymore!
We went to one hospital after another, but it was difficult to find treatment and I didn’t have enough money. In hospital, one doctor, a woman, told me that if I had money, it wouldn’t have been difficult to treat Albertina. But I didn’t have all the money she asked for, I couldn’t earn enough with the jobs I usually did, and it was highly unlikely that I would find someone to lend me the money. After my husband’s death, I didn’t have any more money. The company he used to work for didn’t give me anything and what’s more, his family came home to take everything of any value: they left me practically empty-handed! I was very worried: finding 10 meticais to buy Paracetamol for Albertina was a problem. I even tried to sell my house to get money to treat my daughter, but I didn’t manage to do so.
The only thing I had left was hope, hope in what seemed to be impossible. And then something happened. The doctor who had told me about the existence of a treatment – albeit a costly one – got to know about the opening of a new health centre. She told me to turn to the Community of Sant’Egidio. I didn’t know anything about it, I had never heard of it.
Anyhow, I went immediately to the DREAM centre. I was a bit apprehensive when I walked in, but there was no problem at all. Albertina was registered and did a blood test. And they told us they would start treatment soon. I was so happy, but everything was so strange: it was all free! When I went to the centre and read “Nao se paga”, it seemed plain impossible to me. And yet that hope I had nurtured within, against all odds, had not been in vain… today I can say that the salvation of my life and that of my daughter was literally given to me as a gift.
But my new-found faith was quickly put to the test. I went back to DREAM almost immediately because my daughter was very ill: she could manage neither to sit up nor to eat. Desperate, I asked the doctors if they could do anything for us. I talked to someone working there, who came home with me, and we decided to take Albertina to hospital. They gave her blood transfusions and discovered that she had tuberculosis. Thanks to the treatment she received at hospital, my daughter recovered quickly. She was very anaemic too, but she managed to recuperate anyhow. She spent two months in the hospital of Machava, and it was nice because many friends from the Community went to visit her. She felt much better; happy with all the attention she was getting, she wanted to live and to be well.
As soon as she was discharged, Albertina started to take antiretroviral treatment. From then onwards, she improved all the time until, in 2004, she returned to school and a normal life. Now she is committed to realising her dream, to continue studying. She doesn’t want to look back and to think about the lost time, or to give up because she is sick. She doesn’t want to stop; she wants to press ahead with her studies. We have triumphed over the disease and so we can triumph over everything we come across from now on.
At first, when I came to know DREAM, I was worried above all about my daughter. She was so ill! I had also taken a test and knew I was HIV-positive, but I was not as unwell as she was, I felt fine.
However, when Albertina started to take treatment, as I watched her gaining weight, starting to play again, resuming the normal activities of one her age, growing to the height she is now, I understood better what it means to fight against AIDS. It shouldn’t be ignored, it should be faced. The fact that my daughter got better opened up a path for me as well.
I started to take antiretroviral treatment too. I suffered a bit from allergy at the start, but then it passed. A pill in the morning and another in the evening… now I am well. And what’s more, I have new friends, new prospects.
Today my life is not the same as it was, it’s better. I have found strength and hope which I didn’t have before, even when I was not yet sick. I have discovered new energies, a strength of love which makes me love many, I would say very many.
Today I am the Director of the Matola 2 Nutritional Centre of the Community of Sant’Egidio. Every day, 800 children eat at the centre, children who are hungry for food but often also for affection. Many of them call me ‘mother’. They want to be cuddled, to be listened to, to be bathed, to be dressed. I am really like a mother to them. It is something beautiful for them, but for me too. It is such a beautiful reality that it seems almost like a dream. It is the dream of love that I can give to so many children.
Here in Africa, children often come last. People don’t manage to spend time with them, there are too many problems. One needs above all to worry about working, about getting the food and clothes needed for the entire family, so playing with a little girl, showing affection towards a little boy, may appear somewhat superfluous. But we don’t want it to be like that at the centre. Here, together with other activists of DREAM, we are like so many mothers, who want to show love and to take care of these children, of every aspect of their lives. We work at the Nutritional Centre, we handle long-distance adoptions. We know each child by name; we know each family and its problems.
In recent months, I got to know one little boy better. Jerson was abandoned, and he always came to the Nutritional Centre, especially to me. He called me ‘mother’. He was searching for shelter and protection, because his face was disfigured due to illness, and so the other children kept him at arm’s length. I thought: “Albertina is well now; our house is small, but not so small that we cannot welcome a little boy.” So I talked it over with Albertina and we decided to take him home. Today he is like a son to me and a brother to her, we are looking after him and he is already much better. He has gained weight; he plays and goes to school.
Ah, and talking about school, I am going too: I have started studying again in the evenings. I am in the same class as Albertina, but she goes in the morning. It’s as if I have rediscovered new youth. There is a curiosity in me to know, to understand, to study. There is cultural interest too. I owe this to the Community; I have been to Europe twice, to Rome, and I have understood that the world is large – it’s not only about my experience and that of my neighbourhood.
My life is now rich with friends, with affection, with so many things, and I have the desire to share this wealth with others. I want to help many children. By helping them, I am supporting and protecting the future of my country, a country I love. It is a country in peace however it has lived through war, a war that lingers in my eyes and my memories. When I think of the saddest things of my life, I always think of the war, which I lived through as a child, and of my sickness, and Albertina’s. But today there is peace in Mozambique, and we are fighting AIDS too, and we want to continue struggling against it.
I am fine. But I don’t just want to nurture my joy. This joy was a real gift, as I have already said, but now it is I who can give. I have received freely and I want to give freely. I can truly say that my experience with the Community has taught me about the beauty of giving, the beauty of a gift. Today, I want to live this beauty in my turn, the beauty of giving, and the beauty of giving hope to many who are still crushed and conquered by evil.
On Tuesday, Violet came to the DREAM centre of Mthengo wa Ntenga (Lilongwe). She was with Faith, her daughter, who was just 18 months old.
Faith is one of more than 100 children to be born on the programme of vertical prevention run by DREAM in Mthengo wa Ntenga. When her fourth daughter was born, a few months after she discovered that she was HIV-positive, Violet certainly needed faith – her daughter’s namesake – and she wanted to entrust herself and her child to people who would be able to lead them both out of resignation and despair.
Violet came to Mthengo wa Ntenga on 19 October 2005. She had intended to go for a normal check-up at the local prenatal care clinic. This is a maternity centre which, like the majority of such centres in Malawi, is short of personnel and facilities. Given these shortages, the personnel of these centres often just check the weight of the pregnant women and prescribe iron salt tablets to treat anaemia, which is widespread among people living in countries where malaria is endemic. According to regulations in force in Malawi to prevent the spread of HIV, it is meant to be obligatory to proceed also with an HIV test but unfortunately the necessary kits are frequently not available in rural areas. In Mthengo wa Ntenga, however, thanks to the support provided by the DREAM centre, it is possible to do the test.
Violet listened carefully as the women waiting for their check-up were told how important it was to take the test. She had not been feeling too well for some time: she had a persistent strange cough and frequent fevers. Certainly she was worried… for a Malawian woman to discover that she is positive when tested is a tragedy. Your world falls apart and in a flash, your life is no longer what it was. As soon as the rumour gets around that a woman is HIV-positive, everyone starts to look upon her differently, children will no longer play with her offspring and there are not a few husbands who leave their wives, confirming that they are the cause of the malaise.
That day, however, DREAM workers and campaigners did not stop at explaining what HIV was and how it was transmitted. They were talking about the possibility of treating the disease and said it was possible for an HIV-positive woman to give birth to a healthy child if she followed treatment carefully. Violet screwed up courage and decided to take a test.
And it was the dreaded response: the test was positive. These are terrible moments, when the future induces fear: “How will I manage to return home? What will my husband say? What will happen to my children?” But encounters with DREAM support, encourage and pave the way for new hope.
After the test, all those women who are positive are gathered by specialized DREAM personnel into small rooms that are well kept and well equipped. There is time to talk, without hurrying. Infected people have the opportunity to express their fears, to listen to the stories of those who have already lived through the same experience. They receive practical advice, suggestions as to how to explain the situation to their relatives. They are offered the opportunity of an appointment and treatment for their relatives too.
Free access to treatment is guaranteed, together with medical examinations, laboratory tests and –if necessary – home care and food packages. In a word, you are assured that someone will be by your side in the struggle against the virus, to support you in treatment and to help you.
After the discussion, Violet went back home less worried. She spoke to her husband, then to other relatives and after a week, she returned to the DREAM centre to begin treatment, to start vertical prevention and to save the life of the baby that was to come.
As the days passed, the initial fear and anguish faded to give way to the faith, friendship and serenity that are drawn in at DREAM centres.
And perhaps this is why when the time came to deliver her child, the name of the beautiful baby girl who was born, weighing more than three kilos, was already decided: Faith. Faith that she may be free of AIDS, that she may grow up happy and may become an adult in a world that is less unjust than the one in which AIDS treatment is available only for an meagre minority of infected people.
At the DREAM centre, we watched Faith grow month after month. She came regularly throughout the 18 months for check-ups with her mother. Each time, we checked her growth and weight, and gave her mother advice about hygiene and good nutrition for the baby before and after weaning.
On Tuesday last, Faith turned 18 months, the right age to make a definitive test to determine with certainty whether the HIV virus was present in her blood or not. As usual, Violet came on time with her baby; she was moved and elegant. Expectations were good because all the tests and check-ups made in the past year and a half had yielded good results, showing that Faith had escaped infection, as is the case with 98% of children born on the DREAM programme.
This time, going to the testing room did not cause anguish and, as foreseen, the test definitively confirmed that Faith was the umpteenth child of the Mthengo wa Ntenga DREAM centre to be born healthy to an HIV-positive mother. When Violet learned the result of the test, an impromptu party got under way as she wanted to go around the whole centre, showing her healthy baby to the other patients, to the staff and even to the laboratory technicians who had paved the way, through their work, this small miracle to happen.
Then she went away happy, with Faith in her arms. Truly Violet’s faith that her baby would be born healthy was well and truly answered.
But faith continues to be nourished. While Faith grows healthy and strong, even Violet’s faith is continuing to grow, in the certainty that she has found boundless friendship and can continue to get treatment, to remain healthy and to see her four children grow up.
I see him. At last he has come out of hospital… I ask him how he is and he replies in a thin voice and with a beautiful smile: “I’m fine, thanks, I’m very happy. What about you?” I answer him: “I’m fine too, thanks! You’re very kind. I’m happy to see you again.” He is worried about me; he asks me how I am!
Brilliant says he is happy. Happy about what? He is 14 but he looks like he is eight, and he is sick, very sick. He is our patient, a young patient at the DREAM Centre of Blantyre of Malawi. He cannot walk because he has practically no muscles left. He is so skinny that you can count his protruding bones, covered by just a paper-thin layer of skin. For months, he has been afflicted by diarrhoea and vomiting.
But he is happy. He left hospital and came to the DREAM centre for tests and to pick up his medicine. He is happy first and foremost because he feels better. And he is also happy because it pleases him to see all those who love him and who welcome him so tenderly. He is even happy enough to wait his turn to see the doctor; the important thing is that he does not have to go back to hospital. With us, he feels safe. He does not complain about anything. Ultimately, he is happy to be alive.
His name is Brilliant, and he is a living miracle. This is what Piero says, one of the Italian doctors who accompany Malawian employees of DREAM in their work.
Here, everyone knows Brilliant and loves him. He is very well known at DREAM. We have not known him that long; we met him when he was already rather ill. But we dedicated ourselves to him passionately. Hilda, a campaigner at the centre, follows him up at home and in hospital. She talks to his parents, helping them to hope, always telling them that Brilliant truly shines, that he is worth as much and more than a gem.
We work and pray so that he may continue to live, that he may be better. We have given him a ball; it is something he has wanted for years. We would all love to see him play and run after that ball. Hilda firmly believes that one day Brilliant will become the most important man in Malawi and the whole world… for us, he already is.
Our heart breaks in two when we look at him, but Brilliant pieces it back together for us with his smile and hope, giving us feelings of gratitude and joy, of the joy of life itself. For Brilliant, it is enough just to be alive, but our health is never sufficient for us. Faced with Brilliant and his lovely smile, I want to affirm strongly, never to forget, that for me too, it is enough just to know that he is alive.