For 20-year-old Andrea, the Baby Ubuntu programme was a lifeline. Her son Rafael had been born in 2020 with a neurodisability. When her husband began noticing that Rafael was different to other children, he became increasingly violent with his son. A fierce protector of Rafael, Andrea left her husband and soon became the sole provider for her family.
“I assumed all the responsibility of taking care of the family,” says Andrea.
“And my neighbours were all scared of me, thinking that what happened to my child might also happen to theirs.”
During this time, Andrea felt isolated and abandoned. Few people understood her experience or her child.
“All this changed when a community health worker approached my house and told me about a new programme operating within the Nakasongola district helping children like mine,” Andrea reflects.
That programme was Baby Ubuntu, and it was designed to support people just like Andrea.
Developed with the London School of Hygiene and Tropical Medicine, Baby Ubuntu is an early-intervention programme that aims to improve quality of life for children with mild to moderate neurodisabilities and their caregivers.
The programme also combats superstition and discrimination surrounding disabilities in Uganda.
Baby Ubtunu provides caregivers with the emotional and practical support they need to maximise child development. It is a community-based programme led by healthcare workers and expert parents that have a child with a neurodisability.
“I had gone to many places and lost interest in any kind of medication and help for my child, so I thought this is also another scam of people who only want to use us with our children. I decided to try the Baby Ubuntu programme – but to my surprise, it was the opposite. I saw different parents having children with the same condition as mine.
“This relieved me of so much of my agony, that I wasn’t alone in the world. The facilitators were so hospitable that it made me feel comfortable to open up and share my life experience with them.”
As Andrea continued attending the Baby Ubuntu group meetings, her life started to change significantly. She noticed people interacting freely with her child. She found herself laughing and talking with others again.
“The more I loved my child, the more I started practising what was taught to me. Now he has started sitting and achieving some of the developmental milestones. These days, I always walk with my child’s head up.”
Thanks to the support Andrea received, she has learnt how to care for her child appropriately.
“I have been taught how to feed my Rafael and how to prepare his food in a way that he won’t vomit it back,” she says. “I have learned how to position him in a proper way so that his spine can grow strong, and it’s growing stronger and stronger each day. “
“I am now Rafael’s advocate, his defender. And this is all because of the Baby Ubuntu programme”
Andrea
We’re so proud to see the positive impact that the Baby Ubuntu programme is having on children with neurodisabilities and their families, like Andrea and Rafael.
Read more about the change you helped create in our 2022 Operations Report.
