By Jeff Pinneo as told to Chiqui Flowers | Dec 13, 2012
We were entering the land of farmers, I was told. We were entering a village in northern Uganda that, despite all the villagers’ hard work and labor, could not get away from poverty and conflict. We were entering Odek… the village where Joseph Kony, the infamous rebel leader, was born and raised. We were entering a village that had been suffering for several decades.
As we pulled up, there were hundreds of people waiting patiently around a huge tree. There were sick people and those accompanying them – families whose faces were etched by constant struggle. No smiles. These were the faces of people who’d seen and endured too much.
And then we look at the faces of our Ugandan staff. Most of these coworkers grew up in the same region, in the same circumstances of poverty and oppression as those they were serving. These were the same people who, through the sadness of their own experiences, were determined to help as many people as they could. These were the same people who, with one smile and one caring touch, gave their fellow Ugandans “hope”. I felt honored to be coming alongside them as they set about their work, which began with the setting up of our mobile medical tents – our examination and procedure rooms in the field.
Identifying the kids with Nodding Syndrome was not difficult. Hunched over with open mouths and blank stares, the majority of these kids were severely malnourished. I inquired about this and learned an awful truth about the syndrome: normal eating activity seems to “bring on” the seizure symptoms. To avoid this, many kids choose hunger and stop eating all together.
Of the many kids that we served that day, there are two whose faces and stories especially called out to me.
The first was Tony*, a 13-year-old boy who, according to his mom, contracted Nodding Syndrome when he was 12. In one short year, the ravages of the syndrome, combined with severe malnutrition, changed his appearance to that of a starving 6 or 7-year-old boy. His mom, noting my look of disbelief, produced his medical record book to prove to me that he was indeed a teenager.
The second was a young lady named Anna*, a Nodding Syndrome victim who is 12 years old.
Unlike many Nodding Syndrome victims, Anna looked like the 12-year-old girl she is, until the accident. Her seizure into an open fire left her with third-degree burns on her face and limbs. It’s one of the heinous things about this syndrome – victims seize without warning, wherever they are at the time. In a typical Pader village, there are many danger zones — cooking fires and open water among them — where a seizure can result in death. The pain and the shame that Anna was obviously carrying from her burns, and the illness that produced them, was matched only by the deep strains so evident in the face of her mother.
While our staff provided care for these children, Bill Essig (Medical Teams International’s Vice President of International Programs) and I were able to visit with some of their parents. We learned that most of these parents have other children that require attention and support. That, however, pales in comparison to the constant attention that their child with Nodding Syndrome requires as the seizures can occur at any time and the kids should not be left alone. Sometimes, the parents’ only option is to tie their child to a tree while they tend to their fields to ensure they won’t collapse in a dangerous place.
This was our experience in the village of Odek… a land of farmers…
… where there is conflict… and people who are struggling to survive.
… where there are suffering children… and families who love them dearly.
… where there are staff members and volunteers who serve… passionately and unselfishly.
* Real names withheld.