It is 5.15 am. Kamsy is still in bed with his father, dancing in his usual way (swaying left and right) to the gospel music playing from his father’s phone. Music is his forte. He sings a few lines to his ability.
Kamto is still asleep with her mum. And will soon wake up to another day of challenges: struggling dedicatedly to do laundry, cleaning the convenience rooms, cooking, reading in preparation for UTME/JAMB, etc. She just got her WASSC/NECO papers and scored above 200 in last UTME at 15 years, besting some of her able-bodied high school mates.
Kamsiyochukwu and Kamtochukwu, 16, are the Onwughalu twins living with Cerebral Palsy.
Kamsiyochukwu (boy) and Kamtochukwu (girl) were born at Onitsha, on December 5th, 2005. Kamsiyochukwu’s condition is severe whilst that of Kamtochukwu is milder.
For their parents, Ifeanyichukwu, former banker and Amara, a teacher, life was normal just like any other middle-class family until that fateful day when the kids were taken to the hospital for bronchitis diagnosis and treatment but upon close observation, the pediatrician noticed some abnormalities in them and told them that their beloved twins had CELEBRAL PALSY. Since then, their lives have taken a different turn.
March is CEREBRAL PALSY AWARENESS MONTH. In commemoration of this year’s edition, here is a chat with Mr. and Mrs. Onwughalu.
How did you find out that your beloved twin kids have Cerebral Palsy?
It was in their seventh month when we took them to their Pediatrician at the time, Dr. Ezinne, for bronchitis diagnosis and treatment. In the course of close observation, the pediatrician noticed some abnormalities in them and brought our attention to them. That was the first time we got to hear about CELEBRAL PALSY.
When you found out as a parent, what was your first reaction and what was going through your mind?
My wife and I were shocked at the disclosure. We doubted her. My wife was moved to tears and asked what if the CP was treatable. The doctor’s response that CP has no cure was depressing. We were told that it can be managed. The earlier we get started the better.
Are both children affected same way and do they experience developmental delays same way?
They are not affected same way. We have come to realize that no CP case is the same, even with twins born from the same womb of the same mother.  Like I said earlier, Kamto’s case is milder than Kamsi’s. While Kamto started walking at 3 years, Kamsi is still not able to walk at 16. Kamto loses balance when walking while Kamsi uses wheel chair for his movements. We still carry him about to bathe him, to sit him down to feed. He still wears diapers at 16.  Kamto speaks fluently (English and Igbo languages) and Kamsi picks words, often repeating what he hears from someone. His forte is music.
It must really be quite challenging dealing with this. Give a sense of some moments of frustrations that you have experienced.
It’s absolutely challenging dealing with CP. I mean, we are talking about twins here, not one person. Our entire time, schedules, lifestyles are altered to accommodate them, to make their lives better, achieve more independence and fulfill their purpose in life.  Frustration is something we cannot run away from but we have developed a sort of thick skin to go round it. In place of frustration are love, understanding and belief that they will get better as the days go by.  It is frustrating that one’s life is altered for their good. It is frustrating that in an economy so unfriendly, we have to keep spending, keep squeezing out from scarce resources for their upkeep, therapies, etc.  It is frustrating not getting a helper or nanny at the times we needed to travel for outside engagements. Most people we have had to get do turn down offers because Kamsi is too heavy to carry and they cannot come to terms changing diapers when he poos.
Frequent falls of Kamto and the injuries that come with it is not what any parent will appreciate. We have come to accept and live with it.  However, we are comforted with Kamto’s academic progress and literary talent which at her age, is very commendable. Given more exposure she will go places to make us proud. We are comforted with the fact that whatever she achieves in life, she does for her twin brother too.
Taking care of these kind of children must be a money guzzler. Can you tell about the resources you have invested in this project?
We have expended huge fortunes on them. I worked in the bank for 13 years before leaving the industry nine years ago. At the time, it was convenient to foot the bills for their therapies and medications. We have taken them to numerous hospitals in Onitsha, Enugu, Port-Harcourt, Lagos and even outside the country – Vienna, Austria to be precise. We have had to take them to even Korean-styled hospitals for acupuncture treatments. These come at very heavy costs.
Presently, they don’t go for therapies because the resources aren’t there. There are corrective surgeries to be done which have been put on hold. Imagine the cost of buying diapers for 16 years. That alone can fetch one a princely plot of land in a prime location.  It is unquantifiable the resources invested in this project to date. They are very young and we still have a very long way to go. God willing, we will weather the storm. Joy, we are certain, will come in the morning.
One of the twins, I understand has finished secondary school. How did you manage the societal bullying and stigmatization?
Kamto often comes home with tales of mockery from her school mates and of how they often look at her. The stares and unkind words, to us, are unbearable but we keep counseling her that she is wonderfully made, she is unique and she has to be strong. And that she has to draw strength, toughen up and stare back at them, talk back at them too. Her mum does a fantastic job at counseling her as a teacher and a mother. She often tells Kamto that CP is incurable else we would have ensured that she and Kamsi got the cure. I have shown her instances of other people who have successfully managed with CP and made it in life. A case in point is that of Aunty Chi Chi Iro. She is Kamto’s favorite mentor. Her condition is quite similar to Kamto’s. She is a lawyer, author, fashionista, mother to four grown boys and wife to a dotting husband.  Kamto has had to live through years of psychological depression and she keeps coming out triumphant.
Even now that Kamto made her UMTE result, can you recapture your sense of pride and fulfillment as a father of a child with such disability?
We are so proud of her that given her condition she has made her WASSC/NECO papers and UTME too. She would have been in College but for her age and resources. Now that she has tuned 16, she is qualified for College and has enrolled for another UTME.  The last year turned out to be the most challenging given that she was down and missed out on some of her papers, especially her SSCE. She barely managed to write the rest of her NECO, UTME and WASSC (Private) examinations to get the required subjects. We are extremely proud of our Kamtochukwu.
It is no doubt a daunting task for you and your wife. Can you tell me who is the main driver of courage behind the wheel?
Both of us are doing our bits the best we can. When I was in the bank, my wife was the one doing the running around whilst I did the funding. When I am on leave, we both take the twins for treatments and therapies.  Currently, I am on my own whilst my wife teaches. I have more time to take care of them. For now, they are not going for therapies because of limited resources.
What do you make of the general societal belief that this physical disability is a curse on the family or some form of spiritual affliction?
That is another story entirely requiring volumes to be written. We live in a society that has deep cultural and spiritual affiliations. The cultural and religious belief in Nigeria goes deep and strongly interwoven. We have severally been told that the twins’ condition has ancestral undertone needing deliverance. We have lost count of the hundreds of advice to take the them to spiritual centers for one form of prayer and deliverance or the other. We have, of a truth gone to many to no better outcomes. We still get invites to deliverance programmes.  I believe this platform is needed to send out messages consistently to create that awareness that CP is not a curse neither is it a spiritual affliction. It is a medical issue as much as those of blindness, cancers, down syndrome, etc. It is a brain defect and can be medically managed.
What is your message to other parents going through this rough route?
Encouragement is the word. We have groups where we do tell our stories to encourage one another, to learn from one another and to provide the little financial and professional assistance, the much we can, to one another. Let’s keep pushing and keep winning. God’s got our backs.
What do you think that government can do to help children with such disabilities achieve their potentials, especially in areas of amenities.
A whole lot has to be done structurally and institutionally. Mandate should be given to building of schools, worship centers, public places with people living with disabilities in mind.
Kamto has had to fall several times navigating her way round the school for lectures. Stair cases are not built for her kind of condition.
Public transportation systems are not designed to accommodate people with CP. I have had to drive Kamto to her examination centers for her NECO/WASSC/UTME and stayed behind most times to take her home. I had to help her walk into the examination halls through the steps leading to the halls. She even fell on one occasion. Some of the candidates and I had to help her get up and get her clothe dusted.
Must I have to be there to help her all the time? If adequate facilities and amenities are on ground in such places and given the necessary awareness, she can navigate better.  Then, access to medical care is limited and unnecessarily expensive in many cases. Private therapy services are expensive to maintain. Accessing those in public hospitals are cheaper but adequate attention is not given. One has to put up with the large number of patients and limited time allocated for one’s therapy sessions. This is where the government has to partner with as many corporates, charities, individuals and organizations as possible to provide the needed amenities, facilities and expertise in as many locations as possible.
Can you leave some words on the temples of the hearts of the ignorant public?
Cerebral Palsy is a lifelong disability. No child ever gets over it. People living with CP are not the cause of it. They should be treated with care, love and given respect.  There are other types of disabilities afflicting mankind: blind, deaf, dumb, cripple, etc. That one is able today does not mean one will not be disable tomorrow. Road/motor accidents are regular occurrences through which many people have been rendered disable.  It requires a little bit of understanding, love, care and attention to make the lives of people living with CP and other disabilities better.
Let me end with this word of counsel from Glen Campbell in one his classic songs:
“You’ve got to try a little kindness. Yes, show a little kindness.
Just shine your light for everyone to see.
And if you try a little kindness,
Then you’ll overlook the blindness
Of narrow-minded people on the narrow-minded streets.