LAGOS, Nigeria — For Nigerian musician Joy Odiete, stage name Jodie, widely known for her hit song Kuchi Kuchi and her appearance on Idols West Africa, having a baby should have been a joyful chapter in her life.
Instead, the birth of her son Chinua, who was diagnosed with the rare brain disorder lissencephaly and cerebral palsy, marked the beginning of immense challenges.
“My marriage fell apart three months later. My friends abandoned me. I was dealing with heartbreak and my son’s health,” Jodie, recalls.
“I was so depressed and frustrated that I shaved my head completely.”
Jodie’s emotional and mental struggles were compounded when doctors delivered devastating news.
“The doctors said my child might not live beyond two years,” she says. “They said the condition had no cure and no surgery could fix it.”
Faced with this reality, she temporarily quit music and took a traditional job to cope. “I would often cry on my way to work in the long Lagos traffic.”
Yet, despite these personal trials, Jodie turned to social media, posting photos and videos of herself and Chinua.
The public response was mixed, and she endured trolling and hurtful comments.
“People would ask what was wrong with him. Some even accused me of trying to abort him, which wasn’t true,” she explains.
However, the online abuse did not deter her. “Sharing made me feel better… I want people to accept him for who he is,” Jodie added.
This mission led her to establish the Chinua Children Care Foundation, also called Chinua Foundation, an organisation that advocates for families with children with special needs.
The foundation offers support and aims to improve education and welfare systems for these children.
In Nigeria, where poverty and stigma often shape societal attitudes, parents of children with disabilities face not only medical and financial hurdles but also cultural prejudice.
Oluwakemi Oluwakayode, whose daughter Oluwaponmile has cerebral palsy, knows this all too well. When her daughter was born, doctors withheld the diagnosis out of fear of stigma and the possible abandonment of the child.
“I couldn’t believe my child would be dependent on others for many things in her life,” Oluwakayode says.
Her daughter’s condition, misunderstood by many, led to rumours of witchcraft in her community. “Some people advised me to kill and throw my baby away.”
This painful isolation eventually drove Oluwakayode to withdraw from public spaces.
“I stopped taking public buses due to the comments,” she says. “I was slowly sliding into depression.”
Nigeria’s lack of resources for children with special needs is a growing concern.
According to Dr. Murtala Yusuf from Usmanu Danfodiyo University in Sokoto, many children with disabilities are excluded from education.
“There are very few special needs schools in Nigeria, and those that exist are in terrible condition,” he says, noting the country’s poor implementation of laws supporting children with disabilities.
For Oluwakayode, exclusion became personal when a private school expelled her daughter after her parents complained.
“They stripped my child of her dignity,” she says. “They made me feel like having a child with special needs was something to be ashamed of.”
Despite such challenges, the Chinua Foundation has become a refuge for families like Oluwakayode’s.
“I saw what Jodie did with her baby and I was inspired,” she says. The group, now a community, shares resources and experiences while organising skill acquisition programs for parents and fun activities for the children.
“This community has become my family,” Oluwakayode adds. “I no longer hide my child.”
Others, like Faith Gabriel, a civil servant in Kogi state, have also found hope through the foundation.
Gabriel cares for her grandson, Eleojo, who has cerebral palsy. Left by his father, the child is now in Gabriel’s care, though the task is physically and emotionally exhausting.
“Most of the time, my waist and joints ache because I have to carry him everywhere,” she says.
When Gabriel needed a medical splint for Eleojo, Jodie sent her one. That moment sparked a connection between the two women, strengthening Gabriel.
“If this woman is not tired, then I can’t be tired,” Gabriel says. “She has given me hope to keep living.”
Odiete, determined to use her music to tell the stories of children with special needs, continues to advocate for change.
While donations from kind-hearted individuals have provided some support, she calls on the Nigerian government to fulfil its responsibilities.
“The government and other stakeholders must provide resources to support these children.”
The Chinua Foundation, with its blend of advocacy, community, and hands-on support, is slowly changing perceptions.
“These children may not communicate like others, but they are human beings who deserve to be loved,” Odiete says.
“Sometimes, we come together to laugh, cry, and hug each other. This helps improve our mental health as caregivers to special needs children.”
As societal awareness grows, Odiete hopes more people will accept children like Chinua for who they are, breaking down the barriers of stigma and shame.
“Some mothers reach out to me and tell me how I’ve helped them accept their babies,” she says. “People are now proud of their special needs children.”
Despite the many challenges, Jodie and the Chinua Foundation continue to spread a message of love, hope, and acceptance.
