The first impression isn’t what you expect it to be.
When you walk into a village of 1,000 children who have been abandoned or left behind by their parents, infected or otherwise had their lives turned completely upside down by HIV/AIDS; you expect to feel something profound, something sad perhaps, certainly something on a very powerful level.
Thomas will have none of that. He just wants to look at my iPhone. Actually he first wants me to take a photo of him and his buddies, so they can see themselves on my iPhone. Kids are kids. That is the first lesson.
Sister Mary Owens, Executive Director of Nyumbani:
They come to Nyumbani in groups. It's not very often that one single child comes but you see that they are very insecure. They are afraid even, fear, they have nothing. Some of them have come just carrying whatever belongings they have just in their hands. They are just totally traumatized.
When they see that there's a roof over their heads, there's food to eat, there's clothes to wear, they can go to school without any worries, they just gradually become secure.
The world moves forward with Mercy, who is eight years old. Mercy lost her parents to AIDS. She lives in a small home in Nyumbani Village with her grandfather, her sister, a brother, and six other children. They’ve formed a family in every sense of the word and have renewed the African tradition of taking care of one another. Mercy loves to read. Her sister quietly teaches her while the boys prepare dinner, picking vegetables from the garden.
Nyumbani Restores the African Tradition of Family
The way we envisioned the operation of the village was through what we would ask of the grandparents – that they would be here for the children. Not just for their own biological grandchildren but also for the children of other families. They care for them, bond with them, love them, pass on the values of life and the traditions. Nyumbani provides the basics of what is necessary for the household but we also challenge them to grow some vegetables and fruits because each family has about half an acre around their house.
The goal of the village is sustainability: making the community a viable operation but also helping the children build lives they can support. There is a clinic and a church, as well as a farm that raises livestock and vegetables. There is a primary school and a high school. Many graduates go on to college (40%). Many receive scholarships from programs supported by donors like Johnson & Johnson.
There is a polytechnical school where students learn a trade. The students make their own clothing, build their own furniture, learn how to weld, and are taught stonework and masonry.
You see that the children are very invested in education. The primary school education is our hope and our future, and that's a fact, because when they were at home while their parents were very sick and passing away, their education was very much interrupted. Some of them wouldn't have gone to school even. When they come into the Village and there's school, there's no worries about fees, no worry about uniform or stationery. "I just have to go to school and learn." Our hope. Our future.
Clean water is critical to everyday life in Africa. Safe water to drink and cook with is essential to Nyumbani Village. The homes and school buildings employ a rain capturing system that channels rain from the roofs to tanks that protect and store water for use throughout the year. This system, made possible by Johnson & Johnson, has changed life here.
Sister Mary walks through the courtyard that sits in the center of the classroom buildings at Nyumbani Village. The children follow and surround her. She is constantly encouraging them to think about their potential, what they can achieve, the opportunities they have in their grasp. What do you want to be when you grow up, she asks. Doctor, lawyer, pilot, teacher: the answers come back not surprisingly as they would from any student population that is hard at work in school, hard at work building a tomorrow. These kids are making plans.
Reaching this place, this level of accomplishment, has been a long and twisting road. The idea of Nyumbani came from the necessity of the AIDS crisis in Africa and the vision of a priest from Providence, Rhode Island. Father D’Agostino and Sister Mary Owens were doing missionary work in an orphanage in Nairobi when HIV landed in Kenya like an atomic bomb.
It was only in the mid-80s that the first case of HIV was identified in Kenya. When our founder father D’Agostino felt called to reach out to these children who had been infected with HIV, it was very, very new. In fact, when we went to one funding agency they said, "These children are going to die anyway, get into prevention." We couldn't do that.
Each child is a special creation of God and has a right to live and to have all that is needed to grow up normally. There was quite a bit of opposition. These children would, in those days, just have maybe 3-5 years of life because we had no access to HIV medications. All we could do for these children was to give them quality care where they would be secure, feel cared for, loved, nutrition and then access to immediate medical care when they would develop an opportunistic infection.
Dr. Rachel Musoke, Pediatrician at Nyumbani Home:
Somebody comes to you expecting you to offer something, and then you say, "Sorry, I don't have anything to offer." You look at this person who came to you expecting something good, and you are not able to offer whatever, so in a way, it was devastating for all of us, whether you understood what was going or not.
For years, Sister Mary, Dr. Musoke and the others at Nyumbani were fighting a war with no weapons other than their compassion and efforts to comfort the bodies and souls of the children under their care.
Then the new medicines came and the world began to move forward again.
Clinton lives in Nyumbani Home in Nairobi. Nyumbani Home was actually the first operation established by Father D’Agostino and Sister Mary to confront the crisis of HIV/AIDS in 1992. It’s goal is to help children infected with HIV to recover, manage their virus, and live healthy lives.
Clinton’s mother died of AIDS. The virus was passed to him at birth. Five years ago, Clinton’s virus was no longer responding to medication. His father, who was caring for him, was inconsistent in giving him the medication he needed. Because of that, Clinton was deteriorating rapidly. He had only a few months to live.
When a patient doesn't take drugs consistently, in what we call adherence, the virus develops a way of evading the drugs. The virus continues to grow and it's no longer being affected by the drugs. The viral load continues increasing and increasing, and, of course, the child starts getting sick again.
Clinton came to Nyumbani Home and was given compassionate access to a new third line drug developed by Johnson & Johnson.
Today, Clinton is going to school and enjoying a normal life. He continues to live in one of the cottages at Nyumbani Home under the watchful eye of Sister Mary and Dr. Musoke. The world moves forward with Clinton.
Usually within three months we see a change. If a child's weight had dropped, it starts coming up. With children it's even easier because as soon as they feel well, they are up and about, they are running around, and by the time they've done three months we see a big change. Of course, when we do the laboratory tests, you see that the viral load is coming down, and within three to six months the virus becomes undetectable. Now we are in control and the child continues to gain weight, grow taller, and do all the other things that children do.
The gentle hand of Nyumbani is now reaching out to children who live in challenging environments in the communities that surround Nairobi, children who are vulnerable because they may live in homes with no running water or electricity, because their parents may be sick and destitute, because they are infected by HIV.
The Lea Toto program of Nyumbani operates eight centers that provide medicine, nutritional counseling and social services to thousands of children and their families impacted by HIV.
We don’t think that caring for children, that providing a roof over their heads, food, clothes and education is enough. We want to also help them to feel secure, feel cared for, feel loved, appreciated and we bond with them so that they feel that we’re not just treating them like objects. We are actually relating with them as human persons. People living with HIV have to go to the government hospitals and clinics, because of the volume of case they’re often given a number and you wait.
That interpersonal relationship aspect is not possible in such situations. If they are coming from stable families, no problem, but with the families that we are in contact with, these don’t have the stability. We try to help them to connect with us and to feel that they’re valued. They’re special for us and we are there for them.
This human connection, this commitment to take care of one another, is central to the mission of Nyumbani and to the experience. One might say Nyumbani restores the African tradition of family. You will see that connection as you wander through Nyumbani Village or Nyumbani Home and see a child hug another, or hold hands. These moments are frequent and seemingly without reason other than to connect one person to another on a human level. You are my brother. You are my sister.
These babies who were born on the front lines of this crisis of HIV are now becoming adults and in becoming adults are writing a new chapter in the story of Africa.
Margaret, who grew up in Nyumbani Home, is attending college and studying to be a nurse. She wants to return to the world some of the love and compassion that she received here.
The world moves forward with Margaret, as it does with Johnson.
Johnson is attending college, studying IT, and he is confronting the stigma of the virus. In his gentle and thoughtful way, Johnson bolsters the teens of Nyumbani to be strong in the face of discrimination. He also speaks in the community to help those not infected gain more understanding and show more compassion. He is growing into a confident leader, an important leader.
The World Does Indeed Move Forward One Child at a Time
As we grow up through the various stages of human development we come to the generative stage...the desire to give life to others. In our case because we’re reaching out to children who are living with HIV or are affected by it, we’re giving life to them through caring for their needs. When I think of where they have come from, then I see them here like any other normal child, that they are secure, they’re happy, they believe they can dream their dreams and realize them, that’s marvelous that our caring is making that possible.
We set out to explore the concept of the caring world. Does it exist? We have come to see that it does indeed exist in places like Nyumbani, also in the hearts and minds of people like Sister Mary, Dr. Musoke and the late Father D’Agostino, as well as in the actions of Margaret and Johnson and little Mercy.
It is a reality, it is a state of mind, a hope and even a prayer.
It is proven in the lives and future of the 1,000 children who live in Nyumbani Village, the 100 children who are managing the HIV virus at Nyumbani Home and the thousands more who come to the eight Nyumbani Centers serving the vulnerable communities of Nairobi.
Johnson & Johnson is proud to be a part of a team helping Nyumbani. We are supporting programs that bring clean water, education, and greater access to HIV medicines. Nyumbani is just one example of our many partnerships to impact global health. The world moves forward one child at a time.
Visit jnj.com/HIV to see additional stories of progress and hope as we reflect on World AIDS Day 2016.