Below is the text of the speech presented by Her Excellency, the Wife of the Kogi State Governor, Hajia Aminat Bello, at the occasion of the fund raising ceremony for the Hayat Foundation Institute for Special Needs Children.
Distinguished ladies and gentlemen, it’s a rare honour and privilege to stand before you today on this rare occasion on the official launch and fund raising of the Hayat Foundation Institute for Special Needs Children to mark the beginning of a new era in my life as a woman. Ten years ago, I was pregnant with a child. Like all women who 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 Onoreta Bello.
My joy knew no bounds. At last the baby I carried in my womb for nine months was finally here. But as days gave birth to months, 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 sharpen discovery.
Many times I told myself this was all a bad dream. I couldn’t come to terms with the fact that my son was born with neurological challenge that we will have to deal with for the rest of our lives. At first, this was the mindset that welcomed our first discovery. We were living in denial as parents. It was too so real to be true, but it was real. It was reality staring at us in the face. Tongues soon began to wag. The doomsday prophets said, feared and recommended the worst about our son’s condition. This was a child into a superstitious African society where children of his kind are usually welcome into their families and the larger society not with love but with resentment, hate and social stigma. There were many options being thrown at us, and indeed looking back at where we are coming from, it been a bitter pill to swallow, but thanks to the Almighty Allah that as parents, we’ve found the inner resolve to embrace this challenge as our own unique journey through a world filled with diverse complexities. Our decision to take the road less travelled marked a new turn in our lives. It was the beginning of a journey towards finding closure.
We travelled from one country to another towards finding solution for our son. Everywhere abroad, the receptiveness towards our son was unbelievable. Everywhere we went, they treated us like normal human being and if anything even more special and more important. But back home in Nigeria, it was not the same. When we showed our son much love, people began to ask, we were we wasting our time and money on him as he was not our baby, but to us he was our baby. We love him regardless of his disabilities. Our bond and display of empathy towards our son grew even stronger, and I must add at the is juncture that I am blessed to have a husband who has been so supportive, very caring and understanding to say the least. My husband, His Excellency, he put his foot down and insisted, Hayat is my first son; he remains special to us. His Excellency was always proud of Hayat’s academic progress, and improvement in his social interaction and social scale. His Excellency has at every step encouraged and given me hope in helping Hayat harness his potential. He has indeed shown me how to turn lemon into lemonade, and how to see my cup constantly half full and never half empty. In a lot of ways that gives me peace and comfort, and nothing we are doing here today, tonight would have been possible without the support His given to our son Hayatolla and this noble cause. Thank you my sweetheart. I really appreciate you from the depth of my heart.
Our journey took us to Kennedy Cregan in the United States of America and John Hopkins respectively. It became even clearer that there is nothing wrong with our son. We just found ourselves in a society that has not come to terms or mature to that level. At a stage we considered even relocating but I got inspired by the story of the former President of the United States of America, the late John F. Kennedy and Cregan. Their vision pioneered the Kennedy/Cregan Institute and I felt if we all run away from Nigeria in search of comfort elsewhere, who will be the change maker? So I resolve to come back home to become the change I want to see in Nigeria. That was how Hayat Foundation was conceived. Since its establishment last year, the Hayat Foundation has remained committed to the vision of serving as a vehicle to protect the interest of children with special needs.
One of the objectives we seek to achieve is to spread love and share more information about the myth and realities of cerebral palsy and other disabilities. It is essentially worthy that a developmental disorder that affects a child’s movement, posture and condition. Cerebral palsy is not contagious, not communicable, not a disease and not a curse from the gods. Cerebral palsy occur in about 2.1 per 1000 live birth and about 700, 000 Nigerians re living with cerebral palsy. More than 3.5 million people are directly affected by it. Distinguished ladies and gentlemen, we are gathered here tonight because the Hayat Foundation have decided to take one bold step further in its efforts. Tonight’s fund raising event is aimed at lending a hand to its commitment towards building the Hayat Foundation Institute for Special Needs Children, a world class Pan-African institute that will bring about a positive change in the lives of Africans with cerebral palsy and other forms of disability.
By setting up this institute, the prototype of which we shall be unveiling shortly at this event, we would have made a significant different in the lives of special needs children across Africa who may not be as lucky as our son, Hayatolla. The Institute through a range of policies and services provisions will be designed to enhance their individual skills and knowledge. This will also give them opportunities to exercise their constitutional rights and fully participate and contribute to their respective communities and countries as well. This mission is in line with the united Nations Conventions for the rights of persons with disabilities.
The Hayat Foundation Institute for Children with Special Needs will be modeled after the Kennedy/Cregan Institute of the United States of America, and will focus on five key areas; namely Research and Development, Prevention of Cerebral Palsy and Other Special Needs, Management of Cerebral Palsy and Other Special Needs, Efforts to Find a Cure and Training for Care Givers and Educators, and finally, Provision of Special Mums Forum as well as Special Mums Club.
As a mother and a woman who directly feels what it takes to have a child with cerebral palsy, I appeal to all our friends and well-wishers here today, and to those who may be watching us from home to make generous donations towards setting up this institute.
On a final note, I am using this medium to make a passionate appeal to the President and Commander-in-Chief of the Federal Republic of Nigeria, Mohammadu Buhari, GCFR, to kindly assent to the National Disability Bill.
By signing this bill into law, it will go a long way to addressing the numerous problems and challenges facing people living with disability, and give them a sense of belonging and importance in our society. This law will definitely accord the necessary dignity and respect that they deserve.
Finally, I give glory to the Almighty Allah, the Most Beneficient, the Most Benevolent for the gift of life, health and the wonderful gift, Hayatolla. Having him as a son has taught me more patience, more perseverance and more human.
Permit me at this point to appreciate the efforts of my loving mother, Hajia Hafsat Momoh, for her prayers and support all these years. I’ll love to thank my passionate mother-in-law, Hajia Hauwa Bello for showering us with her love and support. For several times, she had become our baby sitter at home when I needed to travel with Hayat for medical attention. To our lovely children and all members of our family; their patience and understanding has been remarkable. To my lovely sister, Aunty Fati; you are simply my guardian angel. To all our amazing doctors; Dr. Shettima, Dr. Adewoye Adetiloye, Dr. Ekwe, Dr. David Ekudaisi and our therapists, Aunty Dayo and Uncle Innocent, I say a big thank you to you. To the school that accepted our son, Adovi Montessori International School, your singular gesture towards Hayatolla is simply inspirational. To our son’s caregiver, Ibrahim Maisuko, you have been more than a care giver; you have been my son’s best friend. Thank you!
To my darling husband; you have been a friend, a father, soulmate and my mentor. You have supported me mentally, physically and materially. Thank you so much for being my rock. (Appreciating in local dialect). Thank you. If I ever come back to this world again, I’ll still love to be your wife. I am forever grateful for all you have been to me, our son and our entire family. At this moment, I remember what you always say to me when we face our most challenging times, ‘if the sun has not set, why complain’. Today, I see what you mean.
Finally, to my co-wife, Hajia Hadiza, Her Excellency, the Wife of the Governor of Kogi State, thank you for your support and prayers.