Kogi State’s First Lady, Amina Oyiza Bello, had a life-altering experience when her first son, Hayat, was born with cerebral palsy. Having travelled around the world to find a cure for the disorder, she established the Hayat Foundation, named after her son, to provide relief to children born with congenital ailment. She narrated her story to Dele Ogbodo
For Mrs. Amina Oyiza Bello, Kogi State First Lady, the inestimable joy that heralded the birth of the family’s first fruit of the womb knew no bounds. That joy was soon cut short few years later when Hayat, like his age mates, was expected to be up and running to kindergarten school. It was to be discovered that he was a Cerebral Palsy (CP) patient.
Narrating what indeed is a true love-bond unique relationship between mother and son, she said with joy and humility, “Hayat Olarise Bello is my son, I gave birth to him in 2007 and it happened that he has CP.”
Dwelling on ignorance, the Bellos didn’t initially diagnose what was wrong with their son, therefore, they resorted to forge ahead with prayers while still convinced that Hayat was undergoing some developmental challenges which is expected that he will soon overcome, but alas it persisted.
The First Lady said: “We didn’t know, we were just living in denial and still expecting that he was undergoing some things or rather that he was undergoing some developmental stages which didn’t come like we expected, hence our journey abroad to seek solution started.
Though in agony, the young couple were resolute to find solution and travelled from one country to the other seeking solution and of course, “we went through all those challenges and eventually we discovered that he had CP,” Bello said.
Recalling with nostalgia, Bello, explained that most painful of the challenges then wasn’t the physical agony but the emotional and psychological trauma that the family contended with all sorts of people in and around the family.
“But the major challenge we had as a family was having to cope with a child that has CP in a society that was not accepting of his kind, and the major challenge was that when we showed him too much love, people were quick to say that we must have used him for money rituals and that’s why we are showing too much love,” she said.
“Because I experienced and felt loved while I was growing up as a child I became convinced that I have same responsibility to my son and therefore would not abandon him by hiding him in an obscure corner of the house where people will not see him.”
On the journey to surmounting the CP challenge, Bello, punching the air with her right fist, was full of praises for husband who stood with her through it all, insisting that Hayat was his first son.
This tripartite bond between the couple and their son was the elixir that made the world a beautiful place for her. “This gave me encouragement, peace and comfort in our early journey as husband and wife. The search for solution for Hayat’s challenge took us to Kennedy Krieger and Johns Hopkins Institutes in United States (U.S),” she said.
It was at these institutes of recuperation and treatment that the Bellos found solace and comfort in a world where physical challenge or disorder is not a barrier to joyful living unlike in her Nigeria, where the experience is often different.
She said: “It is not just about the wheelchairs and facilities that aided Hayat’s blend into the society. But the society was so loving, so caring and for the first time I realised there was nothing wrong with my son, there was nothing wrong with us; we considered relocating to the U.S. at first, but I got inspired by the stories of the Kennedys and the Kriegers which led to the establishment of the hospital and the school in the first place.
“I felt if we all keep leaving Nigeria to foreign lands where things work, who will be the change maker? she asked. Inevitably, I had to come back home to Nigeria and that was how the ‘fire’ and the zeal to contribute to the society kept burning inside of me.”
While acknowledging the way God often intervenes in the affairs of men, she said: “When by the grace of God we found ourselves in the position of authority today, I felt I have found my calling and I couldn’t help but project the image of these hidden faces; children who are hidden in their homes, not due to a fault of their own, but because of their medical condition.
“This is not just about children with CP,” she said. “There are different special cases out there. Children are locked up behind closed door even when you ask some families, why are all the children not in the family portrait, they will tell you ‘I don’t want people to start talking.’”
According to her, some parents cannot even carry their challenged kids to churches or mosques because of the way the society looks at them, as they will be called all sorts of names and in some cases, even the religious leaders do not help them.
“Now that I’m back in the country and have seen it all, I’m therefore irrevocably committed to giving back to the society the love that God has given me and what I have learnt while in U.S. with the Hayat Foundation advocacy to try to re-orientate our people that it is not true that all challenged children come via exorcism,” she said.
She stressed that “just as some were created black, white and caucasian, it is the same way we have different children and it is just a matter for God that parents are lucky to have healthy children all through.”
Haven gone through these up and down moments, she said she has come to “provide the much needed shoulder for children born with challenges to lean on for parents that are not so fortunate. It doesn’t mean those parents that have special children have committed any wrong.”
Veering into spiritual and faith while citing her situation then, the Kogi First Lady, said: “You will discover that God is just testing you. Your attitude will determine how far you will go with any particular situation. On my part, I have chosen to love my son. I have chosen to embrace him. I want to be that face for parents that are ashamed of their children and also for school owners that are quick to tell parents with special kids to take them back. For them to understand that these children are just humans and their parents are not the cause of their challenges.
“There are people who go about their normal businesses and for accidental reasons they have spinal cord injuries and they have to learn how to walk and live life all over again.”
While expressing government’s lack of serious concern for physically challenged children, Bello advocates that streets, public places and schools be made wheelchair-accessible, adding that every school should have special teachers in every class.
With the provision of wheelchair-accessible schools and public places, Bello said so many children and parents with one related issue or other can no longer be segregated and discriminated upon.
“Every class all the way to the university should have a special teacher so that parents like me are not forced to segregate amongst our children whereby maybe some are accepted, we have to take one outside or travel out like I did. It shouldn’t be,” she said.
On contributing her widow’s mite to help the needy, she said: “We are also working towards opening an institute that will be focused on severe cases. We also intend to have a training centre for therapists; for behavioural therapists, occupational therapists and physiotherapists.
“Teachers that have an NCE can come for an additional programme whereby they are equipped with this basic knowledge, schools can reach out to us for these teachers to have in their schools and also of course to find possible solutions, causes and prevention of CP and other related cases.”
On how she intends to offset the cost of imported wheelchairs, she said: “The foundation is working with some international bodies for used wheelchairs, used standing aid, walking aid for children, since when kids out grow certain wheelchairs of course it becomes useless to them and they have to get bigger ones, so we partner with them.
“In turn we give it out and for everyone that we give out, once their child outgrows it they have to return it so that we can give to some other persons that equally need it. We also partner with some people that sell wheel chairs locally here.
“We discovered that they only bring wheel chairs for adults. When you go round you will never see wheel chairs for children and it is still act of the denial. We have been talking to them that there are children who need them, that is the reason why some of them are usually on the floor because there are no wheel chairs for them so we are partnering with them for other facilities too.”
Speaking from Hayat’s experience, Bello admitted that special children love nature, art and music so that they too can tap into those knowledge of theirs because according to her, some of the best known mathematicians and scientists had one special case or the other.
According to her, their government was able to tap into those things and somehow they were able to explore those good potentials in them and in the end it made them better people, better societies.
While the First Lady will be expecting good spirited Nigerians and corporate bodies to key into her vision by also lending support, she said: “The Foundation is actually a Pan African oriented programme, what we are trying to do is like a replica of what we have in Kennedy Krieger and Johns Hopkins Institute and Hospital.
“We want a situation where people can come from all over Africa; you don’t have to go to Europe to get quality education for your ward if they have special cases. We are going to have even boarding facilities for such children.
“To that extent we don’t intend to restrict it to Kogi State, it’s actually national, it’s West African, so it’s wider than that in scope.”
On challenges faced by parents with special kids, Bello, who recalled her personal experience before she traveled to U.S., said: “The stigma was there, but love for my son kept me moving.
“Starting from your immediate home and even coming out when he is walking people are whispering. The mockery can make parents develop all forms of depression and most parents don’t really see reason to live on hence reasons why some of them chose to live in denial, to lock them up.
“I was advised to try all sorts of things on my son for instance, some say why not take him to the village but I and my husband were like how will our kids grow up to know this. For other people it is easier for them to live in denial but we were not brought up that way.
“Today, we celebrate him, even his siblings are looking out for him, supporting him just because we made it so and my husband, to a large extent, really helped in this regard. Some people even wanted to make it look like something must have been wrong with me, but he said ‘no, this is the will of Allah’, an today we are better for it as a people.”
On her experience in America, Bello, said the two continents are miles apart in caregiving to special kids, adding that somehow the stigma is prevalent in Nigeria which shouldn’t be.
“When I said I found 70 per cent closure in the America society. There I was eager to go and whenever we go out either to shop or to stroll in the park I always come back home burning with tears of joy and its either I must have lost count of people who walked up to us ‘Hello, cute boy, how are you.
“Some will sing to lift his mind up, if we are in an elevator and there is a button to press, somebody will just oblige us, out of nowhere to press it and when we are to enter an elevator we are given first right at all times.”