Sickle Cell Disorder is one of the most common chronic yet treatable genetic disorders in Nigeria and several other parts of the world. Millions of those who encounter this disease often have tales of woe and lamentation to tell.
Living with this disorder is the only life that Alhaja Ashiata Aduke Onikoyi-Laguda has ever known since she was born on the 1st of November, 1925. Widely acknowledged as the oldest person with Sickle Cell Disease in the world, Madam Onikoyi-Laguda has had a fulfilled life regardless of the chronic disorder.
Alhaja Asiata Aduke Onikoyi-Laguda With antecedents in the famous Onikoyi family of Isale Eko, in the heart of Lagos, Mama Ashiata (the righteous one) is a celebrity of international repute. Unarguably one of the oldest persons living with Sickle Cell Disorder, her home is a Mecca of sorts, people coming from all over the world to pay obeisance.
As she turns 92 in a few days, the matriarch is as full of life as ever even as she remains a relentless fighter against the enervating illness. A recent encounter with the nonagenarian was a pleasant surprise. Mama Onikoyi-Laguda, as she is fondly called, was having a late morning nap when Saturday Vanguard called at her residence, a story building in the heart of Ilasamaja, a Mushin suburb on Lagos Mainland.
She sat up in the double bed that was placed at one end of the spacious living room of the 3-bedroom apartment on the 1st floor of the modestly adorned building. Unhurried, she spoke: “You are welcome to my home.”
Her voice was soft but firm and steady. A bit wrinkled but not for the worse, Mama Onikoyi-Laguda exuded an aura of resoluteness, courage and determination. “Sit by my side,” she gestured, smiling to reveal a complete set of healthy dentures. Scattered on the bed are various items including a rechargeable fluorescent lamp, clothes, a walking stick and different volumes of the Holy Koran and the Holy Bible.
In the midst of the exchange of pleasantries, a young man in dreadlocks entered the room bearing a tray with a steaming hot plate of rice and spaghetti. He announces it’s lunch time and Mama requests to be excused to take her lunch. She introduced the young man as Bolaji Alakija, one of her grandsons. “Bolaji takes care of me. He cooks, washes and cares for me. “ After eating up half of the contents of the plate, Mama requested for an orange-flavoured bottle of soft drink. “I eat and drink whatever I want. I’m allowed to indulge as long as it is edible,” she announced to her guests.
Lunch over, she sat back and settled down to chat. Her memory is not as good as it used to be about a couple of decades ago, but she has enough agility to move around the apartment unaided. “I do not feel 92. I actually feel younger,” she said excitedly. “Even when I turned 90, I felt the same. But it is obvious age is telling on the energetic nonagenarian.
Even she confesses she is no longer able to cook her meals, wash her own clothes and do many of the things she used to do on her own. That is now the responsibility of Bolaji, her grandson who is now her guardian and full time housekeeper. Day she fell down “One thing I must admit however is that I cannot run again, not since I had a fall.” Relieving the incident, Mama admitted that she probably over did things. “It was not long after my 90th birthday.
On the day in question, I washed my clothes, spread them outside and then went out. But the weather changed and it appeared it was going to rain. I did not want my clothes to be ruined by rain and so I was rushing back home to gather the clothes when I tripped and fell face down.” She injured her right hand and for a whole year couldn’t use it properly. She couldn’t even eat with the hand.
Prior to her 90th birthday, Mama was still going out on her own “Now I have overcome the illness. There is nothing I don’t eat so long as it is edible. I do not like to worry my grandson, so since I fell, I can only walk in this living room and at times I walk downstairs. Going down memory lane, for Mama, in many perspectives, the pains of the Sickle Cell Disorder are a distant memory, confined into the past. For her, the worst is over.
No more pain, no more strain but a lot of gain. Early years “When I was born, they said I was Ogbanje (evil child) because no one understood the illness. My late mother had had a child that died previously and she was quite advanced in age when she had me. “My early years were full of pain,” she recounted with a glimmer in her eyes. “It was one crisis after another. My mother said the crises began when I was three years old and I had an attack of measles. The outcome was pain all through and till the end. “I was having pain in my hands and legs. The pain was so bad I was unable to eat using my hands.
Walking was also very difficult because of the pain in my legs.” Mama recalled that because of the persistent pain, she developed a habit of sitting or standing by the fireside. “Sometimes, my clothes got scorched because I was staying too close to the fire, but I thank God that now I can sleep under the fan and with the air-conditioner switched on.” On 30th of September 1960, the eve of Nigeria’s independence, Mama left the shores of Nigeria for the United Kingdom. She recounted the event. “In 1960 when I was to travel to England for further studies there were fears that I might not survive the cold weather over there. My mother in particular worried so much about this, but I was able to reassure her that the God that was keeping me alive in Nigeria would also keep me alive in England. So I travelled to England and even gave birth to a child in 1962 while I was there. That child is Mrs Mosun Adeniji.”
As she spoke, Mama pointed to a framed photograph on her bedside stool. “That is Mosun’s child, my grandchild – Ore. One of her sons, Funbi is now over 30. We live here together. School days “I was admitted into Queens College in 1948 at age 13 and was quite an intelligent student. I remember being in the examination hall, and being asked to stand up. Initially I thought I did something wrong, but I was moved into Form 3 instead of Form 1. I could not start school earlier because of this disorder and largely because of my father. Everybody knew I had Sickle Cell Disorder. It was not hidden the way it is hidden now. “In fact, chances were that if my father hadn’t died at the time he did, I might not have been educated because he over-pampered me to the extent of preparing eba with sugar for me. “My father cared for me so much he spoiled me.
His sympathy for me was beyond measure. Unfortunately he died young and I had to go and stay with my mother on who the onus now fell to ensure I was educated.” As a kid, it was a big challenge for her late mother who had to strive to no end to send her beloved daughter to school. Life in England “But my mother summoned the courage, strength and knowledge to see me through. I went to England on the eve of Nigeria’s Independence on the same plane that brought Princess Alexandria that came to declare Nigeria an independent nation on 1st of October 1960. Our independence was celebrated all over the world.
There was no sleep in England on that day. All the hotels were opened all night and everybody enjoyed themselves. “I went abroad as a student even though I had given birth to four children. I was tiny in appearance, and no one would easily know I had four children. But I opted for that because I wanted to have a cheaper rate of transport. When I went to England my mother was trading in Sierra Leone but I begged her to come back home to help take care of my four children. However, she later regretted the idea of leaving her four children back home in Nigeria as she became lonely in England and soon realized she needed them for companionship. Mama was in England for four years. She went to the Pitman’s College and got employed in the Post and Telecommunications (P&T) as a Teleprinter Operator. “We started the use of the teleprinter at that time and we were taught how to operate it. There was no dull moment all through.”
Her typical day begins quite early. After the morning prayers and a trip to the bathroom, breakfast is next. “Sometimes I have a late breakfast, but usually take something not too light and not too heavy. I do not sleep much because I’m prayerful and I watch TV a lot. In fact, my TV set is permanently on, I have my Bible and Koran, which I like to read when there is power supply. If there is no power, I know some psalms off hand and recite them.” As if to prove her prowess, she recited Psalm 24 in Yoruba. Mama recalls that she has been on holy pilgrimage to Mecca 13 times. “I went whenever I had the strength and the money. The first time I went, it was quite challenging. I quickly learned that it is important to have a good heart to go on the pilgrimage. If you don’t have a clean heart you cannot perform Hajj.”
Does Mama have regrets? Her straight answer is no. “I have no regrets. God has given me a good attitude of prayer, there is no problem one cannot overcome with prayer, just open your mouth. It is a weapon God has given us. He says we should ask of anything and it would be given to us. He always does it. But the law of God, the one about loving your neighbour as you love yourself, and doing no harm must not be flouted. “If we regard ourselves and brothers and sisters, this world would be a better place. I regard you as mine because if you do not love me you would not be here.
I’m grateful for the Genotype Foundation and Doris Gemiloye and what they have done for me. “Sickle cell is not a condemnation, if you learn to manage it, you can live with it. It is because I’m old now that I am not too active. I used to go to the hospital when I was stronger, and the health providers always looked after me. I used to trek from here (Ilasamaja) to Oshodi, then down to Mushin just to exercise, I washed my clothes the way I wanted. Today, Nigeria is what we are making it, leaders should be more concerned about the people. Why is there no power supply? Don’t we have the money to generate the power or what is the problem? We know it is because there is no sincerity, and until we have a change of heart and be concerned about each other. I’m optimistic Nigeria will improve. We will keep praying Secret of longevity
What’s Mama’s secret?
“I have no secret, I know my God and I know that anything I want, I can get from Him. All he demands is that I love my neighbour as I love myself. I have had a fulfilled life. I practice my religion, I love people around me, I do not look for unnecessary things and everyone that comes near me loves me. People love me and that helps a lot. I thank God for that.
“People living with Sickle Cell Disorder should take care of themselves; follow their own dos and don’ts. When it is cold I keep warm, when it is warm I stay warmer, I eat normally, balanced diet. Be prayerful, know your God. He is the greatest strength we have. Future expectations As I am turning 92, my expectation for Nigeria is that we love one another much more than ever before. When we love one another and stop segregation of ethnicity, we would be doing what is right. God has blessed this country so much,
“I am hoping to live up to 125 years. My father did not live long, my mother died at 70, but my grandfather, known as Baba Alawo lived to be over 120 years. He resided in Ibadan and used to fast a lot. When my husband was about to die, his last wish was that I should stay here in this house. That was 25 years ago and I’m still here, marching on. I promised him I would be here till I join him, He died in 1992 “I do not go to the mosque again. I used to go until I fell. But now they come to see me. Since I was in kindergarten I have been taught that God is a spirit and he sees me all the time. Sickle cell disease is a chronic sickness that doesn’t let go. I have it and have had it since I was born. I don’t know life without sickle cell disease. All the pain, daily aches, and crucial crises that came out of nowhere are gone. Sickle cell is never predictable and has impacted my life beyond words. But I’ve learned to cope with it. I’m fulfilled.”
When asked to speak about his grandmother, Bolaji who was named after his grandfather Abimbolaji Alakija, was not short of words. “I would love to write a whole book. She is my grandmother, beyond that she is my heroine, saviour, mentor, and guardian on earth. “She has been the angel sent to ensure my journey on earth is meaningful. Without her there is no me. I’m the one caring for her now. I owe her a lot and there is nothing I can do to repay her kindness.