Nonye Nweke adopted a five-day old child and by the sixth month, the baby was diagnosed with cerebral palsy. She tried everything to no avail and instead of bemoaning her situation, she decided to care for other children and parents in her shoes. Fourteen years after, she tells her story working with them 24/7 in this encounter with YETUNDE OLADEINDE.
The environment at the centre is neat, colourful and almost quite until you step in. A beehive of activities and you find children, teenagers all taking their therapies and being attended to. It’s a full house and the children and care givers are engrossed in their world. Oblivious of the world outside and you cannot help but admire their perseverance, dedication and passion.
Are the children making progress? you ask Nonye Nweke and she responds by showing you a photograph of a baby and she asks, ‘how old you think the child is?’ You reply saying, ‘two years old’ but she goes on to tell you that the child in question is ten years old. “When I saw the child, I also thought he was about 18 months. However, you could tell from the dentition and bone density.”
“Is Zimm her first child?” you ask. “She is the only child that I have. I am known as mummy Zimm because it’s on her account that I am doing this.” Next, Nweke takes you through her personal experience and how she got into setting up the centre.
“My daughter is adopted, so I don’t have her history, or what caused it. You know cerebral palsy is caused by damage in the brain and the damage could be as a result of jaundice and others. But for her, I am not quite certain what happened. But from the presentation, one can simply say that it was severe but the extent one does not know. She was adopted and I was told she was six days and I got to know when she was five months.”
How did you feel initially? “As a human being, of course you are shocked, angry, depressed, went through denial bitterness and all that. But I didn’t live in that for too long because I had the privilege of knowledge.” You also want to know if she is a medical personnel and she responds this way: “No, I am not. I never heard the word until that day the doctor said, ‘Your child has cerebral palsy.’”
Just before the revelation, Nweke was running a restaurant business in the same building where the centre is today. She continues her story: “The doctor said, she had cerebral palsy; that you can’t even train her like this. He advised that I should take her back.”
That was thirteen years ago. “Then we didn’t have internet like we do now, but I had the privilege of having a wireless access on my desk. So, I was able to read and it helped me to go through the ‘mourning’ period and to understand that it is not a personal thing. It is not something I did. It is a universal thing; something that happens all over the world. So, I knew I had to move fast and ask what I do.”
Naturally, you want to know what kept her going in the midst of the trauma. Her words: “Principally, you want to help your child and then suddenly you found that there were so many people in your shoes, who didn’t have the benefit of the education and knowledge that you have. My philosophy has always been that what you have is not really yours, even if it is knowledge. So, the question always has been what I have is for others. Normally, you have something and you just want to keep it to yourself. I have knowledge and I want to share.”
So, Nweke had to put on her thinking cap trying to figure out what she was going to do beyond her child. “One shouldn’t just help oneself, you don’t grow that way. In doing that, I am able to not just see my child but to see a lot of other children, other families who still don’t have the benefit of information that I have or slight economic advantage that I have.”
When Nweke therefore found out that there was a dearth of knowledge, dearth of information, she made up her mind to bring succour to children with cerebral palsy.
“Initially, what I wanted to do was a support group but I found out that in Nigeria, we are not matured enough for that group because basically a lot of people are hungry and you find that for many, disability has become a passport for poverty. We spend so much on the child but there is no social support. The rich ones, educated ones are fine. Some would find a way by getting passport, visa and travel with the child. Once you find your way, that is fine. So, people just tend to think just for themselves.”
But, somehow, Nweke wasn’t just comfortable thinking about herself. “So, I decided to think beyond myself and that has helped me to heal fast. It’s been 13 years; my daughter would be 14 years this year.” This is obviously something that occupies her times and she answers this way: “Yes, it is a 24/7 thing. The children live upstairs and I live here as well.”
Cerebral palsy, she states, is a broad spectrum and you have mild and severe cases. “Everyone, whether you are on the mild or severe spectrum, they all improve. For us, when we talk about improvement, many think this is if she is now going to university. For us, that is not improvement. We look at the child and see that she is improving and not getting worse and that is what happens across board.”
Unfortunately, she notes that many of these children are abandoned and usually made to suffer. “It is actually what made me start what I am doing. A lot of children on her spectrum are just are just left alone. Autism with cerebral palsy are disabilities but they manifest differently. For children on the severe spectrum, most of them are the ones that are often neglected.”
To buttress her point, Nweke makes a comparison with children who are active at home and those who are quiet and often neglected. “So, someone has to speak for them. If you go to some homes, you would just see them lying on the bed, nobody does anything for them because they think it’s never going to work. So, why waste your time on them? But that is not the point; we want to see the children making progress.”
You ask Nweke to talk about some of the memorable cases that she has handled since she began 13 years ago, and her face brightens. “I would tell you something and like they say pictures don’t lie. This is the picture of one of our children when he came to us. Then after some years, this was him. You can see that he has made wonderful progress compared to where he was when we met him. For instance, you can see how we got him from this to this state.
“In 2016 July, this child was in a private hospital because LUTH was on strike at that point. He was so ill that we had to invite Professor Elesin, the consultant paediatrician at LUTH. The private doctor had worked so hard and he just didn’t know what to do. His bill came up to over one million and that was because the doctor discounted so many things for us. We thought he was going to die but he didn’t die.”
How does she raise funds for such bills? you ask. Helplessly, she responds with a sigh: “We beg now.”
She goes on to show you another photograph of the boy on her desktop. “Here we were feeding him through the nose before we started feeding him with the tube. This is the tube we inserted; the tube is two hundred dollars and we have to change it every three months and sometimes it may not last up to that. So, for me, the question is where the child was. If the child has severe brain injury particularly for cerebral palsy and they don’t get the necessary care, you find that as the years go by, the child degenerates.”
She continues: “Like this young man here, he came in 2015 and a couple of months later, we got him to be like this and today this is what he looks like. So, would you now say he is making progress or not. For us, every child matters. It is not all of them that would go to school. Now, we are talking about inclusiveness for every child, irrespective of status. If you place a child like this in the classroom, what is he going to be doing? You are just going to leave him there. He is going to urinate and defecate all over. So, it is better for him to be in a place where the people are managing him well. And then you have to check.”
What happens, according to Nweke, is that people don’t go and check, particularly those who need support. “Last year, you were here and remember in your head that you saw Samuel. When you come back without looking at the pictures, you can look at him and ask questions about his progress. Is it that they are not doing therapies for him? Are they giving him his medications and everything he needs. All this are important questions people should ask. When he came initially, we couldn’t even sit him on any chair. After a while, we could only put him in a corner chair like this when we want to feed him. But today, you can see him. He has made awesome progress.”
To update herself, Nweke reads and the internet has been a very useful resource. “I read a lot and then every year, I go to Belgium to understudy. If you look at the kids, you would see that their hands are tied. I stumbled on this therapy about seven years. I go to Belgium every year to understudy them, come back and train my staff. I have also been to Turkey; there is a cerebral palsy centre where I learnt some things too.”
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