Supporting Families Affected by Nodding Syndrome
In some communities of northern Uganda, families live with a daily fear that no parent should ever have to face.
Nodding syndrome is a severe neurological condition that affects children, most often between the ages of 5 and 15. Children with nodding syndrome experience repeated head-nodding episodes and seizures, especially while eating or when exposed to cold. Over time, the condition can lead to malnutrition, physical weakness, delayed development, and cognitive decline. There is no known cure, and children require constant supervision to stay safe.
For many parents, this means they cannot leave their children alone even for a moment.
Without supervision, children with nodding syndrome are at high risk of injury. During seizures, they can fall into open cooking fires, wander into rivers or ponds and drown, or injure themselves on sharp objects. In extreme cases, some parents resort to tying their children to a tree or a post when they must briefly attend to farming or household work—not out of neglect, but out of desperation to protect them from harm.
Michael's Story
Michael is one of those parents.
He is the father of several children, all of whom are affected by nodding syndrome. As shown in the photo, Michael and his daughter live in a small, fragile shelter that offers little protection from the elements. Michael can no longer work regularly in his field because his daughter needs constant care and supervision. Leaving her unattended could put her life at risk.
Like many families affected by nodding syndrome, Michael faces an impossible choice: work to find food, or stay home to keep his child alive.
How Food Support Changes Lives
Through our Food Distribution Program, Kimara Community Development provides food assistance to families deeply affected by nodding syndrome. By supplying basic food needs, we help reduce the pressure on parents like Michael to leave their children alone or place them in dangerous situations.
This support allows parents to:
- Stay home and watch over their children safely
- Avoid harmful coping practices such as tying children to trees
- Ensure children receive regular meals, reducing malnutrition
- Preserve dignity and hope during an overwhelming situation
Why This Work Matters
Families affected by nodding syndrome are not only battling a medical condition—they are facing poverty, isolation, and emotional exhaustion. With the right support, parents can focus on protecting their children rather than making heartbreaking decisions for survival.
At Kimara Community Development, we believe no parent should have to choose between feeding their family and keeping their child safe. Our food distribution program is a lifeline—offering relief, compassion, and the chance for families like Michael’s to live with dignity.
