Archive for July, 2006

Buna’s Story

Sunday, July 30th, 2006

Buna is a fifteen year-old boy who lives near the Ouko River, a river that is dry most of the year in Lui. The word Ouko means east. This dry river bed is to the east of Lui and was the site of the original water source that the first missionaries, the Fraser’s, found in the 1920’s. Buna lives in sight of the place where the first baptisms happened in Moru land. His parents, Sosthen and Veronica have planted bananas and coffee plants in the rich bottom land that have begun to produce in recent years. Sosthen is a priest in the diocese of Lui who works as a chaplain at the hospital in Lui and Veronica is a nurse who works there also. By Lui standards, they are comfortable. They are in the process of building a new home further from the Ouko because, in the rainy season, water threatens their compound making life even more dangerous for Buna. His parents fear that he could fall into the rushing waters of the Ouko and drown because Buna suffers from Nodding Disease.

Buna is tall but he is very thin. He has the dull expression that is characteristic of Nodding in Lui. Nodding is a disease that occurs only in the Yei River valley and, seemingly, only among the children of the Moru tribe. I say seemingly because little research has been done on this disease due to war. It could be said that the children who suffer Nodding are, in some way, victims of war as well. Research done by the physicians of the hospital in Lui and the World Health Organization published in 2003 found that the children who nod are virtually all infected with the parasite that causes River Blindness: onchocerca volvulus (OV). But the mystery is that there are others who are infected, including members of the Dinka Bor tribe, who also lived in the valley and who do not nod. What causes this mysterious disease to affect the children of the Moru?

Nodding describes the response these children have when given food to eat. They begin to nod – dropping their chins to their chests repeatedly – when exposed to food. It seems that the nodding is a form of seizure but it progresses to full epilepsy complicated by a loss of mental acuity. Because their seizures are triggered by food, the children lose weight and become malnourished. They do not grow properly nor do they have the strength or mental acuity to continue in school. The BBC report on Nodding Disease in 2003 said that in the village of Amadi (near Lui) some 12% of the children have Nodding Disease. I can’t verify that but Sosthen says that virtually every Moru family has a child who nods.

Buna spent some time in Amadi with an aunt until he began to nod. He came home while continuing to go to school until his seizures worsened. His family worried about bringing him back into the home with all his siblings. “What if it is contagious?” they worried. They brought him home but he stayed in his own tukul (mud hut) and ate food from dishes that were kept separate. His brothers and sisters watch him when they play or when they are in the home. He could fall into a fire, another serious consequence of the disease. Imagine a child kept isolated in his own home but this child is clearly loved.
Sosthen invited me to come to their compound to meet Buna and to watch him eat. He specifically asked me to bring my video camera and to film him eating because he thought possibly I might show it to someone in America who might be able to come up with a treatment that help this beloved child. He also asked another pastor, Simon, to come on a Sunday afternoon to pray for Buna.

Simon and I had a difficult time getting to Sosthen’s compound. It was pouring rain and, although it was less than a mile to his house, it took us more than an hour to get there. [We tried to pull another truck out of the mud unsuccessfully with a Land Rover.] Because we were so late, Buna had already been fed so we doubted that we could catch the nodding on video but Sosthen decided to try anyway. Buna washed his hands just outside the door of their new house that Sosthen is building higher above the river so it won’t flood. Then Buna sat on the floor with his left side against the outside wall of the veranda. This position was where he usually sat because it prevented his falling to the floor during seizures. Then we watched this boy begin to eat.

It seemed that he would be able to eat the meal with no problems. He was given chicken stew which he seemed to eat without difficulty. As the video ran, Sosthen described what it was like to care for a child with Nodding Disease. He continued to eat and it seemed that he would be able to enjoy food without troubles but suddenly he began to stare and his hand, filled with chicken meat, seemed stuck halfway between the bowl and his mouth. As the broth dripped from his hand, Buna’s eyes flicked from left to right and back rapidly. For what seemed like an eternity (in fact only a moment or two) he stayed in that position without responding to Simon who approached him and removed the bowl from his reach. Then he began to eat the food from his hand again. I was grateful that the seizure was no worse and that he had the food he needed for this day at least.

As Buna rose to go outside to wash his hands again, Sosthen continued to describe this devastating disease and its effects on all of the people of Lui Diocese. When Buna returned, Sosthen, Simon and I gathered all the family (some 20 people) together to read Scriptures, pray, anoint with oil, and lay hands on Buna. It was a powerful time seeing all the family members kneeling around this child with crosses of oil glistening on the foreheads of all of us as we prayed on the veranda of the unfinished house in the cold rain.

In our western perspective, we tend to think, “Seizures triggered by food – must be psychological.” And when seizures cease for even a short time following prayers we again think that it must be an emotional problem or some kind of mass hysteria or post-traumatic stress disorder. The people of Lui think that it must be contagious because it happens in families or that it must be a consequence of war. Many say that this never happened before the war so there must be some kind of poison or contamination that the enemies left behind. Could they have contaminated the water of the Yei River? I suppose anything is possible but it seems to be limited to this one tribe and there are many tribes that live along the same river. Whatever the cause, we need to pray that the children of Lui soon have a cause of the disease and an appropriate treatment so they might be healed. The doctors of Lui are continuing to do research and working on such a treatment. Meanwhile, we must hold these children in our thoughts and prayers and pray that the doctors and researchers will be able to help them. After all, they are the future of Lui.

Reflections on Returning Home

Thursday, July 6th, 2006

I was sitting at the computer scanning through photographs on my screen saver by hitting the right arrow key yesterday. Pictures from throughout the past twenty years popped up randomly from the brain of the computer. So what kind of computer would put together two pictures that caught me so off guard? My computer, obviously. The two pictures were both from this year. One was a young boy that I had come to love in Lui and the other was of a table in Provence from last week.

The table in Provence was at the home of Ron’s sister and it was groaning with baguettes still warm from the bakery, olive bread thick with delicious black olives, cheeses from all over Europe but especially the delicious cheeses of southern France, there were glasses of red wine, bowls of summer fruits in season, and fresh salad with olive oil and balsamic vinegar. We were all seated around the table and rejoicing in being together: Jan and her husband, Paul (French), Lucie (who lives in London) and her boyfriend Slavick (from Poland), and Ron and me. Lucie’s cat, Angel, went from place to place trying to nab a piece of cheese or other delicious crumb. I felt safe, blessed and embraced by these delightful people who have come to be my family and I thanked God for them.

The other picture was of the dear little boy I met in Lui. His name is Eliaba and he is about nine years old. His family walked a great distance to bring this little guy to the hospital after he developed a huge abdominal tumor. His four siblings had already died as a result of Nodding Disease and now Eliaba had this huge tumor. At first it looked like the tumor came from his kidney and involved his spleen as well when we did an ultrasound scan on him. The doctor said to me, “Well, Deborah, I think we must give this child over to God.” There was only one medication that might work so he was given his first course of it right away but we didn’t think he could possibly survive. He was tiny with ribs that could be counted from across the ward but the tumor was visible even under the big red sweatshirt he wore habitually.
Eliaba
After talking with his parents, two pastors and I read Scriptures, read the prayers for the sick and anointed him and his parents. We turned him over to God and God took care of him. Within a day, his tumor was visibly smaller–the meds were working! The Great Physician was taking care of this little guy. It was awe inspiring to say the least.

As the tumor continued to shrink, we were faced with another problem: Eliaba’s family had no food nor any money for food. You see, in Sudan, families do the cooking for patients who are hospitalized. Eliaba’s family had been in Lui for quite a while so had run out of money to buy food in the market. Eliaba was losing weight and his always-prominent ribs were now standing out in stark relief above the now-shrunken tumor. He was responding to medicine but, as the doctor said, “What are we going to do? Keep him here to starve to death?” So he was discharged to go home so his family could get food for him.

I worried about him the whole time he was gone but when he returned, visibly stronger and weighing more, I was relieved to see that the tumor had not grown but had continued to shrink! The last time I saw him, the tumor was quite small and only visible on scan. He looked like a normal healthy little guy albeit with less hair. God does great things!

So, I will struggle with those two images: beautiful tables of delicious food and a little boy who will never know that kind of prosperity but there is one thing these two photographs have in common: love of family and friends. I am lucky to have experienced love in both places and realize just how blessed they both make me feel. The Great Commandment says to love the Lord your God and to love your neighbor as yourself. The people of Lui are our neighbors. I hope you come to love them as I do.

Taliatokpe (peaceful words),

Deborah