The children come first—some shy, some playful, others clinging to their mothers’ dresses—each carrying a diagnosis that, in many Ugandan communities, is still misunderstood. Around them are their caregivers, mostly mothers, who have learned to navigate a world of whispered judgment, long hospital journeys, and, too often, abandonment.
In Bukiike village in Nyenga Division, Buikwe District, they gathered not for spectacle, but for recognition. About 100 parents, children, and advocates marked World Down Syndrome Day in a quiet, deeply personal way—far from the official ceremonies that often define international observances. Here, the focus was simple: to be seen, to be heard, and to learn how to care for children too often hidden away.
The event was hosted at Ekisa Ministries, an organisation whose name means “Grace” in Luganda. Together with Hearts of Joy International and the Down Syndrome Foundation of Uganda, the group created a rare safe space for families who are frequently isolated.
“Our goal is to help families understand their children and begin to fight for their rights,” said Maureen Kunya, programmes director at Ekisa Ministries. “Too often, these children are hidden or left behind. We are here to say they are worthy of love, just like any other child.”
For many caregivers, the biggest challenge is not medical—it is social. Deep-rooted beliefs still label children with disabilities as cursed or bewitched. Such stigma, advocates say, cuts across both rural and urban communities, shaping how families respond to diagnosis.
That response often falls heavily on mothers. Many spoke quietly about raising their children alone after fathers left. At the gathering, only two men stood among dozens of women.
One of them, Asuman Menya from Iganga, described his son as a blessing. Now a year and a half old, the child is recovering well after heart surgery in India last year. “This is God’s plan,” Menya said. “A child is a gift.”
Another father, Johnson Waiswa from Jinja District, attended with his one-year-old child despite the financial strain of repeated hospital visits. “I don’t have money,” he said. “But I want to care for my baby.”
For many children with Down syndrome, survival depends on early medical intervention. Dr. Judith Namuyonga, a senior consultant paediatrician and cardiologist, told families that about half of children born with the condition have congenital heart defects. Many develop severe complications within months if untreated.
“If we don’t operate between four to six months of age, we often lose them,” she said.
Namuyonga, who drew on her own experience growing up with albinism, said empathy is central to her work. She described meeting distressed mothers in hospital corridors—often alone, overwhelmed, and unsure of what lies ahead.
“I have learned to support the mother,” she said. “My attitude cannot change.”
Medical experts at the event emphasised that Down syndrome, also known as Trisomy 21, is a genetic condition caused by an extra copy of chromosome 21. It occurs randomly and is not linked to curses or wrongdoing—misconceptions that continue to fuel stigma and delay care.
Beyond health challenges, language itself can be a barrier. In many local dialects, there is no neutral term for Down syndrome, only derogatory labels that reinforce discrimination.
“Those are not the right names,” Namuyonga said. “But that is what many of us grew up hearing.”
Yet amid the challenges, there is resilience. Organisations like Hearts of Joy International are working to close the treatment gap by funding life-saving heart surgeries and raising awareness about early diagnosis and care.
“These children are a gift,” said Lauren, the organisation’s executive director. “We provide surgery, but we also help communities understand how to care for them.”
Still, gaps remain. No local leaders attended the Bukiike event, a reminder to many that policy attention lags behind community need. Advocates say greater government involvement is critical from improving early screening to supporting families through public health systems.
For now, change is happening one conversation at a time. Under a bright afternoon sky in Bukiike, caregivers shared stories, compared struggles, and, for a moment, felt less alone.
“Every child matters,” Namuyonga said. “And every heart matters.”
