After nearly eight years away from reporting on health and disability issues, journalist and Nodding Syndrome advocate Pat Robert Larubi, popularly known as Pat Larry King, has returned to the field to amplify the silent voices of children and families affected by Nodding Syndrome.
While meeting families in Angagura Sub-county, Pader District, Larubi revealed that he was arrested several times by security operatives in Odek, Lalogi, and Angagura during his earlier efforts to expose the plight of children and families battling the devastating condition.
His remarks came after parents shared painful testimonies about the challenges they continue to endure while caring for their children, including stigma, sexual abuse, exploitation, poverty, and a sense of hopelessness.
“I have come back to listen to and tell the story of Nodding Syndrome once again,” Pat Larry said.
“I was among the first journalists who reported extensively on Nodding Syndrome when suffering children were being transported from Northern Uganda to Kampala for treatment. I witnessed firsthand the pain and suffering these families went through. As someone from this region, their struggle touched me deeply,” he said.
“After almost 15 years, hope has dwindled. Many people have moved on, and some parents are so overwhelmed by the burden of care that they only wish for their children to find peace through death. What a frightening reality,” he lamented.
Larubi expressed concern that despite years of advocacy, stigma remains widespread among affected families.
“When I still hear parents talking about stigma today, I feel like crying,” he said.
He appealed to development partners, donors, and well-wishers to stand with families affected by Nodding Syndrome.
“I am speaking passionately because I have seen the pain these parents carry every day. Many have lost hope and no longer think about tomorrow. If we do not give them hope, then our coming here serves little purpose. We must stand with them and restore their dignity and hope for the future,” he said.
