By Magnus Eze
Tongues have not stopped wagging in the nation’s capital about the bold step recently taken by Kogi State Governor, Yahaya Bello and his wife, Amina when they broke long years of silence on their first child, Hayatula Olarise, born with cerebral palsy.
The couple chose the unveiling of a Non-Governmental Organisation (NGO), Hayat Foundation and fund raiser for the foundation’s institute focused on supporting children living with cerebral palsy and other disabilities, to share their heartrending story.
Their decision to break the silence was in tandem with the theme of this year’s World Cerebral Palsy Day: ‘We will tell the world … I am here, we are here’ marked on October 6.
It was indeed a gathering of eminent personalities which included the Ooni of Ife, Oba Adeyeye Ogunwusi,Ojaja II, the Minister of Labour and Employment, Senator Chris Ngige, the National Security Adviser (NSA), Maj.Gen Babagana Mongonu (Rtd), All Progressives Congress (APC) National Organising Secretary, Senator Osita Izunaso. The keynote speaker was Africa’s richest woman, Mrs. Folorunsho Alakija.
Other notables at the event were the Emir of Zauzau, Alhaji Shehu Idris, Atta of Igala, Dr. Michael Ameh Oboni, Ohinoyi of Ebiraland, Alhaji Ado Ibrahim, Ovation Publisher, Dele Momodu, Princess Aderemi Adebowale and American-Nigerian philanthropist, Modupe Ozolua.
From the entertainment industry; came popular comedian, AY who emceed the programme, Timi Dakolo, Annie Idibia and Charles Ewurum among others.
With the stage colourfully set at the upscale Abuja Hilton, Mrs. Bello broke the ice after a brief video presentation on the project.
In a short address, she encouraged parents of special needs children to never give up; noting that with good education and adequate care for them, there is always light at the end of the tunnel, no matter what challenges and discrimination they face.
For her, that day marked the beginning of a new era in her life as a woman; especially with the array of guests and the fulfilment of her desire to stand up for children of special needs.
In an emotion laden tone, Mrs. Bello recalled: “Ten years ago, I was pregnant with a child. Like all women, to savour the joy of motherhood, I was heavy with expectation. After nine months of waiting and praying for safe delivery, a handsome baby boy was born. We named him Hayatula Olarise Bello; my joy knew no bounds. At last, the baby I carried in my womb for nine months was finally here. But I didn’t know that the unexpected hand of fate was writing a different story.
“With time, we discovered that our new bundle of joy was stricken with cerebral palsy. How on earth could this happen; we said to ourselves. It was a shocking and shattering discovery. Many times I told myself that this was all a bad dream. I couldn’t come to terms with the fact that my son was with a neurological challenge that we would have to bear with for the rest of our lives.”
She showered praises on the husband for standing strongly by her all these years, pointing out that he would during the most challenging times, tell her that “The sun has not set; why complain”.
The Bellos had sort different forms of medical attention all over the world to resolve it but to no avail until it dawned on them that God had brought Hayatula for a special reason; which is to reach out to greater number of children suffering with such conditions and their parents as well.
They believe that a major step in confronting the stigma suffered by many families not only in Nigeria but in Africa and other parts of the world was to have medical institutions or facilities designated to cater for such patients.
The Co-founder of the foundation explained, “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 cerebral palsy. There are different special cases out there. Children are locked up behind closed doors 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.”
Describing her son as a special gift from God, Mrs. Bello stated that the proposed Hayat Foundation Pan-African hub will help in the expansion of global access to care and treatment of cerebral palsy and other special needs like Down syndrome, deafness and blindness.
Also, Gov. Bello said efforts were being made to ensure that the foundation was sustainable so as to possibly last for centuries.
He said: “It is such a wonderful privilege to have a child with special need that will take you round the whole world seeking for solution for him; it is such a divine opportunity from God to serve humanity, you would do nothing other than taking the health sector seriously. So, that is why I have prioritised health as one of my thematic areas of governance and we will not stop until we reach everyone necessary.”
The Ooni commended the Bellos for standing up for ‘the hidden faces’, saying, they had actually challenged him and a lot of other parents that were hiding their “God’s given asset; God’s given energy that only desire special needs.
The monarch urged people to always thank God for making them whole, as he added “We are lucky we can raise our hands; raise our legs, nod of heads and walk as we like.”
In her remarks, Alakija said the Bellos were exceptional promising her total support to the project.
Cerebral Palsy is a group of disorders that affects the way the brain controls the ability to move muscles which occurs during childbirth or early stage of childhood.
Scientists have not figured out what damages the brain to disrupt the ability to move muscles.
Although it remains a non-curable disorder; it is not contagious and does not necessarily affect intelligence or cognitive ability of victims.
Many communities hold superstitious beliefs that it is as a result of the sins of the parents while some other consider it as a spiritual attack thereby seeking different forms of healing which often ends up in abusive situations against victims.