In the shade of a tree outside of a mud hut in Kigunda, a village in Uganda, Wamusudiza Gertrude’s children were eating a plate of greens and millet, a dense brown starch, with their hands. Most older children wore ragged shirts and short pants while one was sitting naked on the ground. Younger children wore either a shirt or shorts.
Nsasi Alvin kept missing his mouth with the food. Even on the rare occasion when he succeeded in putting the food in his mouth, the food kept falling out onto either his naked body or the ground. He had an abnormally large head and a blank expression. Most children in villages are mesmerized by foreigners, but Alvin did not notice that a foreigner was talking with his mother.
Gertrude said that Alvin developed normally until he turned six months old, but then his head kept getting bigger. As his head enlarged, he became less responsive to outside stimuli. Concerned, Gertrude carried him to a health center. The health worker there simply referred him to a larger health center, which referred him to yet a larger health center. The mother rode a bicycle for two hours with the child to the other health center, where they also told her that they could not do anything, and referred her to a hospital.
The nearest hospital from Kigunda was over two hours away on eroded bumpy dirt roads by motorcycle, but no one in Kigunda owned a motorcycle. Mobilizing enough funds and organizing the logistics to make a trip to the hospital often takes days, and many people die from this delay.
Gertrude and her husband finally gathered enough money to visit a hospital, where she was told her child had too much water in his brain (hydrocephalus) and the operation would cost 700,000 Ugandan Shillings ($230). For subsistence farmers like Gertrude, this kind of money is nearly impossible to acquire — Gertrude said her family’s income for a household of eight earns merely $65 per year.
Gertrude and her husband returned to Kigunda and gave up hope. One day, though, while she was carrying Alvin on a trip to the borehole to fetch water, an American missionary saw the boy. The missionary also took the child to the hospital and ascertained the cost for treatment. The doctor who could perform the procedure was traveling that day, so the missionary gave the money to someone he thought was trustworthy.
“The child received a chance when a muzungu (foreigner) came and gave money to get treatment at a hospital, but the person the muzungu gave the money to ate the money,” Gertrude said.
In what can perhaps be interpreted as a sad microcosmic commentary on racial and ethnic stereotypes, she proceeded to say “Why did the muzungu give the money to an African? We know that Africans will just eat the money.”
Alvin’s story is all too common in rural Uganda. Practically all villagers are related to someone who had a treatable childhood illness that turned into a lifelong disability or disfigurement.
Isabirye Wilson had just finished burying his son. He had taken his 6-month old boy to two different health centers, but neither of them could provide medicine. (Medicine is supposed to be free at health centers, but can also be bought at drug stores scattered across rural Uganda for small amounts of money by Western standards, but unaffordable to subsistence farmers.) While Wilson searched for money to buy medicine at a drug shop, Wasule Essau died of pneumonia a week and a half after his symptoms started.
At the burial ceremony, Wilson showed me Mbwari Margaret, also his child. Both of her wrists were immobile and one of her feet was turned in a way that a foot should not be turned. When she stood up, the top of her foot, not the sole, was making contact with the ground. Her ankle joint was twisted and contorted.
Wilson said, “No one has money here. When I went to the hospital, they said that they could fix it if I had money, but now it’s too late. She will be lame forever. How can she marry? How can she farm? Her life is over before it started.”
There is no institutional or government support to help children like Alvin and Margaret. Parents, with limited resources and money, will continue feeding and caring for children who will never achieve independence.
While the world is angry at the illegal killing of a lion in Zimbabwe, thousands of parents watch helplessly as their children die from treatable diseases or become disabled for life every day. Where is the anger to fight for the rights of these children?
This story was supported by the Pulitzer Center for Crisis Reporting.