ODEK, Uganda ― It begins with a simple repeated head nod, as if the child feels the slow beat of music no one else can hear.
Then the slow spasms worsen into violent fits, epilepsy-like seizures often triggered by the smell of food.
In the remote north of Uganda, thousands of young children have contracted and scores have died from one of the strangest conditions that has baffled scientists and doctors worldwide for decades ― nodding syndrome.
Without professional attention, children with nodding syndrome may die in their teens. Good care can save a victim’s life, yet such help is often out of reach for many in this impoverished area ― and it may soon vanish altogether. Government aid is limited, and the center that has provided most of the support for the incurable condition is struggling to raise funds.
For children who rely on this care, the future is uncertain.
About 3,300 children in northern Uganda are affected by nodding syndrome, while around 5,200 suffer from a form of epilepsy which resembles it. How many have died from the mysterious disorder remains unknown. Since cases are often geographically concentrated, it has devastated whole villages.
Uganda is the hardest hit, but the syndrome has also been reported in Tanzania to the south, where scientists first recorded the condition in the 1960s, and in neighboring South Sudan, where a brutal civil war means the extent there is unknown.
“Despite numerous and extensive investigations in all three countries, very little is known about the cause,” the World Health Organization confirmed.
Nodding syndrome has a horrific impact, impairing development both physically and cognitively.
Yet Opiyo Ballam, a smiling 19-year-old man who stands waist-high to the nurses who look after him, has not let the condition defeat him.
Despite a painfully twisted spine ― a common sign of a syndrome which results in stunted growth as well as cognitive and neurological deterioration ― he beats out a thumping roll on a wooden drum as part of music therapy.
Ballam can’t talk, but he understands conversation and communicates with signs and laughing eyes.
“Music makes him come alive,” said nurse Okot Robert, who works at a residential center caring for 29 children in the village of Odek. “We’ve shown here nodding is not fatal, and that with therapy children flourish.”