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Parents of children battling neurological disorders in Manafa District are expressing renewed hope that their children will thrive and become productive members of society, thanks to a new initiative known as The Hidden People Project.
The project aims to provide treatment to children born with neurological conditions such as hydrocephalus, spina bifida, brain tumors, and other nervous system disorders.
Betty Gibono, a resident of Masaka Town Board in Manafa District and mother to Mwolobi Esther, who was born with a condition affecting her eyesight, believes the initiative will help her daughter receive the treatment she desperately needs.
“My child was born with a swelling that has even covered her eye, but she has managed to reach Primary Three at Buta Primary School. I am now hopeful that this new initiative will save our children with such conditions,” she said.
Madina Mutonyi, a grandmother from Bukhayima Village in Butiru Sub-county, is also caring for two grandchildren diagnosed with hemiparesis, a condition that causes paralysis on one side of the body.
“One of them does not talk, and I’m completely overwhelmed. Taking care of two children without proper medical support is difficult, and even transportation to the hospital is a challenge. This project gives us hope that we will finally receive help,” she shared.
Rodgers Namatati, the Director of the Hidden People Project, was inspired to start the initiative after a personal experience. His own child was diagnosed with hydrocephalus while still in the womb and received early surgery in the UK, where Namatati is based.
“Our experience made me think of the hardships faced by families in impoverished communities. Many of these children are hidden from society because of their conditions, often due to stigma, lack of knowledge, or the inability of parents to care for them,” Namatati explained.
He added that the project aims not only to make treatment accessible but also to provide psychotherapy and rehabilitation for children recovering from surgery.
“Even when hospitals like Cure in Mbale City offer surgeries, these are brain-related disorders that require post-surgery care and emotional support. Children need love, care, and acceptance to help them grow confidently. We also want to educate parents, especially those who associate these conditions with witchcraft,” he added.
Sonia Namatati, a physiotherapist and also a mother to a child born with hydrocephalus, emphasized the importance of ongoing care beyond surgery.
“After surgery, my son still couldn’t talk or connect with others. These children need specialized care, emotional support, and help with learning, socializing, and reintegration into society,” she said.
Dr. Dennis Lukoye, a medical practitioner at Cure Children’s Hospital in Mbale City — a specialized neurosurgical hospital — welcomed the initiative.
“We perform surgeries at Cure, but recovery requires more than that. These children are not like others — their nervous systems are affected, and they need continued attention. This project is a godsend and the first of its kind in the region,” Dr. Lukoye said, attributing the rise in such conditions partly to unsafe childbirth practices.
“Many rural mothers avoid antenatal care and give birth in unsanitary environments — gardens, compounds — which exposes children to greater risk,” he added.
Tsekoko Michael, the District Community Development Officer for Manafa, acknowledged the scale of the challenge.
“In Manafa District, we officially know of 4,312 children with disabilities, but that’s just those who have been reported. In total, 12% of children in the district are disabled, and we have over 1million vulnerable people. Due to poverty, even free treatment is inaccessible because many parents cannot afford transportation or are unaware of available services,” he said.
