Cerebral Palsy is a neurological disorder that affects movement, muscle tone and posture caused by damage that occurs to the immature,developing brain, often before birth. Every case of cerebral palsy is unique to the individual. In this part of the world, most parents cannot seem to come to terms with the condition of children birthed with this disorder.
This NGO understands that, hence takes it upon itself to be responsible for caring for and nurturing children with Cerebral Palsy, especially when their parents are away tending to other needs.
In this interview with YNaija’s #Impact365 series, the selfless Nonyelum Nweke, who is the Founder of Cerebral Palsy Center (CpCentre) based in Surulere, Lagos tells us about the NGO and their efforts in the caregiving regard.
Can you tell us about your NGO?
CpCenter (CpCenter) is a nongovernmental organization founded in 2010 to act as a cushion on which families coping with the challenge of raising children with Cerebral Palsy (CP) can fall on. It is the first center in Nigeria to solely manage children with CP, a lifelong congenital disorder that results from an injury to a part of an infant’s developing brain. More often than not, families whose children are diagnosed with CP and hear that word “Cerebral Palsy” never heard the word before then. There is nowhere for them to turn to for emotional support and to get information on what to do with the child. So CpCenter provides that. We provide a place where parents can leave their children suffering from Cerebral Palsy, go to work and be rest assured that the children are receiving adequate care and therapies. We counsel parents, helping them to arrive at the point of accepting their children and wanting to help them.
You’ve been around since 2010, what has kept CpCenter going?
I will say it’s just God’s grace which we see daily through people He sends to support our work. There is also my family and friends who have stood by us from day one and the hard work dedication and commitment of the Center staff.
What has it been like dealing with parents and families of children with cerebral palsy?
Dealing with the parents could be easy or difficult depending on the background of the parents. Parents who are not educated are more difficult to deal with as it’s not easy making them understand that CP is a medical issue that has no cure. With the educated ones, it’s easier to get them to understand the condition, thus acceptance is easier. Acceptance is essential because that will help to make you want to help your child.
One of the things CpCenter set out to achieve is to bring parents and families of children with CP together to sort of own the management of their children, determine what their tomorrow will be and as a group, make demands on the necessary body instead of waiting for it to be done “for them”. This is one of the reasons why the center runs free services. But it has not been easy. I have seen that a lot of people are individualistic, and we are used to having things initiated and done for us by government.
Since you’ve mentioned the government, are there enough structural and financial provisions by the Nigerian/Lagos state government in supporting children with CP?
The question should be: “Are there structural and financial provision?” There are no structural provisions. A walk on the street, visit to public buildings and public transport system will confirm that to you. Provisions are not made for individuals that need assistive devices like wheelchairs or walking sticks to move around. Most people with CP are on wheelchair or they need assistive devices to move around and the roads and public places are not made with that taken into consideration. There is no financial support either, though the Lagos state government recently launched a disability fund, we are waiting to see how that plays out.
Have you faced any challenges? How have you coped with them?
Of course there are challenges, ranging from lack of staff, accommodation to finance.
It is difficult getting staff particularly those that work as caregivers for a number of reason; many people do not want to do the work of caregiver, particularly on the night shift. And because we are working with little no money, even when you get the staff they do not last as they soon grow tired as the pay is not commiserate with the work they do. There is no government support. No funds from government.
We also have challenge with accommodation, where we are is ill fitted for what we do; it is a rented place and quite small for what we do.
We constantly train and retrain the staff to make them see the need for them to help grow the system. Continuously, we reach out to friends and family for financial support.
What are your future plans/projects for CpCenter?
Our plan is to buy land, put up a purpose-built facility that will take in a reasonable number of children. It will have facilities that will be suitable for children, young adults and adults with CP. Cerebral Palsy is a permanent condition, with proper care and management, most of the children will live into adulthood and proper provisions have to be made for them.
We are starting off this project by having a charity concert this year which we plan to be an annual event to raise funds to buy land and build. The concert will hold on the 18th of Dec at the MUSON CENTER.