Susan’s son, Akello, is now three years and thriving, thanks to the Baby Ubuntu programme. But sadly, his story began with confusion, pain and fear.
Akello was born at Nakaseke Hospital with birth asphyxia and urgently referred to Kiwoko Hospital where he was cared for in the neonatal intensive care unit (NICU) for nearly a month.
Susan and her husband were thrilled when Akello finally came home. But they soon noticed things didn’t seem right.
“My baby fell sick frequently, and as months passed, it was clear he wasn’t growing like other children,” Susan said. “His body stiffened, and he couldn’t do what babies of his age could. My husband and I were overwhelmed.”
Overwhelmed and without clear answers, Akello’s parents turned to traditional explanations. Believing his condition was due to witchcraft, they sought help from native doctors – spending what little they had on rituals that brought no healing. Sadly, this is not uncommon in Uganda, where there are perceptions that having a child with a disability is a curse or punishment for wrongdoing.
“My husband was convinced someone had bewitched us out of jealousy,” Susan said. “We sought help from native doctors, spending what little we had on rituals that left us more broken and confused. Someone mentioned the Baby Ubuntu programme, but my husband outright refused to hear of it. He forbade me from taking our son to any modern treatment, insisting it was witchcraft.”
Desperate to help her son, Susan was willing to try anything. She brought Akello to a Baby Ubuntu session in secret. Her courage changed everything. Baby Ubuntu is a programme of early care and support for children with neurodisabilities in Uganda. It aims to improve quality of life for children with moderate to severe neurodisabilities and their caregivers.
“When I stepped into the Baby Ubuntu programme with my son, my life changed. The team counselled me with such kindness and understanding. They didn’t judge me, instead, they supported me with knowledge, food supplements and hope.”
Susan finally had answers. She learnt that Akello had a neurodisability. As she continued to attend sessions, Susan learnt to care for Akello and provide him with the support he needs.
“I learned how to prepare meals for Akello, even with his swallowing difficulties. I learned physiotherapy exercises that I practised every day.” Susan said. “Now, my son can sit up on his own. He can crawl around, something I never thought I’d see. My husband, who once forbade me from seeking help now allows it”.
Susan now imagines a hopeful future for Akello.
“My dream now is to see my boy stand on his own, to walk, to hold objects firmly in his hands. I’m no longer filled with fear or despair.”
“Baby Ubuntu has given me hope. They’ve been my strength, my counsellors, and my family when I had no one else. Every small change in my son, every milestone, is because of this programme. I’m grateful beyond words.
“For mothers like me, who once felt lost and blamed themselves for their child’s condition, Baby Ubuntu has been a beacon of light. I know that it’s not witchcraft, but love, care and support that makes the difference.”
