In Nigeria’s commercial capital city of Lagos, nestled within lush greenery, lies a majestic edifice of orange and butter colours. The building, known as the Cerebral Palsy Centre, is a haven for fully dependent individuals living with cerebral palsy. Founded by Nonye Nwoke about thirteen years ago, the centre aims to provide specialised full-time care options for those living with cerebral palsy in Nigeria.
Cerebral palsy, a physical disability caused by brain injury during pregnancy, birth, or shortly after birth, affects movement, coordination, muscle tone and control, reflexes, posture, and balance. It is the most common lifelong physical disability worldwide, with approximately 18 million people of all ages affected by it. In Nigeria, data on the number of cerebral palsy cases is not readily available, but a study estimates that 3.5 per 1000 Nigerian children have cerebral palsy.
Discrimination and lack of support are commonplace for caregivers of cerebral palsy patients in Nigeria. Many parents face abandonment by family and friends, blame, and stigma from society, including religious institutions.
From Paid Catering To Free Caring
Nwoke is no stranger to such challenges, having adopted Ziim when she was six days old and learning four months later that the baby had cerebral palsy. Friends and family urged her to return the child to the state government and get a replacement, but Nwoke refused. She researched the condition and decided to care for her baby no matter the cost.
Her determination to provide the best care and education possible for her daughter was dampened by outright stigmatisation and subconscious discrimination. After struggling and failing to find a specialised care centre for her child, Nwoke decided to shut down her thriving restaurant business and founded the Cerebral Palsy Centre.
CP Centre, as it is fondly called, provides advocacy, counselling for caregivers, therapy, specialised day and boarding care, training and family support. The centre’s services aim to ensure that people living with cerebral palsy can get specialised standard care at no cost. The centre said its operational model is built around support, with Nwoke sustaining operations through her network of family and friends, and soliciting funds on social media.
In its 13 years of operations, the centre said it has never collected payment for its services, making it important for the services to remain free due to the economic realities of many parents with children with cerebral palsy.
“Society stigmatises them and the church, the same. They tell you that you didn’t pray enough. Are you a witch? Is that not stigmatisation?” says Nwoke.
Making Impacts, Confronting Challenges
The Centre says its services have made a significant impact, with about four children moving on to join the regular school system. However, getting the right workers has been a challenge, according to Nwoke. She admitted that the work is gruelling and hardly rewarding, requiring a heart of service. Moreover, she described the operations as manpower intensive, requiring one staff per patient. Limited funding, however, has made it impossible to expand the staff and get all the experts needed.
Nwoke dreams of parents taking ownership of the process and getting more involved. She expects that parents should be willing to work in the centre and care for their children. However, their general lack of interest has been a big issue.
“My dream for the parents of children with cerebral palsy hasn’t been met. I expect that parents should be willing to work in the centre and care for these kids but they often refuse. If I have like three parents who are all over the place like I am, it would make a lot of difference. They can even come around and volunteer once in a while but many of them just drop the child and start calling you over the phone. They only come during holidays to pick them up,” says Nwoke.
Despite the challenges, the centre is still regarded as a beacon of hope for families with children with cerebral palsy in Nigeria considering its services are critical in managing the condition, which becomes more challenging as patients get older.
Nwoke emphasises the importance of therapy, physiotherapy, and Advanced Biomechanical Rehabilitation (ABR) therapy in caring for patients with cerebral palsy. She used to travel to Belgium for training in ABR therapy, and specialists also visit the centre to train staff. However, the COVID-19 pandemic has made it impossible to continue in-person training, forcing the centre to rely on virtual training through Zoom.
Daily operations
A day at the CP Centre starts with workers bathing and feeding patients before taking them to the therapy room. After therapy, patients are wheeled into the TV room and closely monitored until dinner time. Workers like Veronica Victor described the tasks as gruelling and requiring patience, dedication, and love. Aside from being a staff at the centre, Victor is also a mother to a child with cerebral palsy and she noted that it takes a heart of service to care for these children.
“No be work wey easy at all. It takes love for those children. And requires teamwork,” says Victor.
Jessica Azege, a mother of four from Markurdi, Bayelsa state, recalled how she was abandoned by family and friends when her child was diagnosed with cerebral palsy.
“People don’t understand cerebral palsy. When they see your child in that state, friends desert you, and family refuse to come to visit,” says Azege.
Governance vacuum and parental expectations
Nwoke said caregiving for a child with cerebral palsy is no easy task, and believes that the government should do more to support parents and caregivers. She said there is the need for counselling, specialised clinics, and schools for children with cerebral palsy.
“There is a lot that the government ought to do, starting from counselling. For instance, when I got the diagnosis, there should have been a social worker to talk to me. You can’t compare us with abroad, but at the very least, we should have a dedicated clinic for cerebral palsy with specialists that can educate caregivers,” says Nwoke.
Nwoke also emphasised the need for parents and caregivers to manage their expectations about the progress of the child and provide psycho-social support to help them cope with the challenges.
Visionary Optimism
Despite the challenges of discrimination, lack of support from the government, and the limited number of care centres in Nigeria, Nwoke remains optimistic regarding continuing to provide hope for families living with cerebral palsy. The optimism is valid and there are indications that more people are beginning to take notice of the need for specialised care for cerebral palsy patients. With more awareness and support, Nwoke believes that there is potential for more centres to be established, and for families living with cerebral palsy to have access to the specialised care they need.
In June 2022, a cerebral palsy centre was inaugurated in Abuja, Nigeria’s capital city, by Aodofa-Anijira, who had lost two children born with the condition. Beneficiaries believe that the establishment of specialised care centres like The Cerebral Palsy Centre and the new centre in Abuja are a step in the right direction towards improving the lives of children with cerebral palsy in Nigeria.
Beyond providing specialised care for children with cerebral palsy, the Cerebral Palsy Centre is also seeing its impact expanding to the creation of job opportunities for staff and providing a platform for advocacy and education. For Nwoke, her vision now is to expand the centre’s operations and services to reach more children with cerebral palsy in Nigeria.
“I have a dream of creating a cerebral palsy village, where the children can have a life that is as close to normal as possible. We want them to have a happy life, and we want them to live as independently as possible,” says Nwoke.
This story has been supported by Nigeria Health Watch through the Solutions Journalism Network, a nonprofit organisation dedicated to rigorous and compelling reporting about responses to social problems, solutionsjournalism.org