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Thursday, June 13, 2024

STEPHANIE AGBAJE | Founder, Marvel Sickle Cell Foundation.

My name is Stephanie Agbaje and I’m 46 years old. I hail from Umumoha in Mbaitoli Local Government in Imo State. I grew up in a poor background. My parents were petty traders, and they gave birth to seven children. I’m the first child. While growing up, life was a bit better because both parents hustled so hard to make ends meet. My dad was a very loving man who was willing to sacrifice everything for his family. He would wake up early in the morning to go to the market. He was our strength and backbone, but unfortunately, he died early and left us devastated. It has been twenty years now since his demise.

After I lost my dad, the responsibility of raising seven kids was too heavy on my mom, so everything became hard. We lacked the basic necessities of life. I love food so much that I couldn’t endure starvation. Can you believe I ate from our neighbor’s dustbin when we didn’t have food? In our home, even spoiled food tasted like a delicacy. I was sent to live with my grandmother to reduce the burden on my mom.

Life has taught me that there is no food for a lazy man. While living with my grandmother, I started trading and doing menial jobs to support myself. One of the odd jobs I did was car washing. I met a man and told him to let me wash his car. He was impressed to see a hard-working girl, and that was how I got the job. The man was so nice to me. He would give me food, money, and even some of his children’s old clothes and shoes. He did all that with no ulterior motive. It will be very difficult to find such kind-hearted people in this generation.

I have been fighting my battles since childhood. When I want something, I go for it. It was not easy to obtain a Bachelor’s degree in English Language. As a student, I sold different items in the hostels and did part-time jobs. I sponsored my education with the money I earned and the one my mother gave me.

I am a mother to a boy and two girls. My first daughter’s name is Marvelous Agbaje, and she is a sickler. I found out within her first year. Her condition was very serious and her major complication was acute chest syndrome, which occurs during a crisis attack. Whenever it starts, she feels like her chest will divide into two. I used to watch my daughter groan and wish I could bear some of the pain. Unfortunately, I couldn’t. I still remember how I cried and questioned God for allowing my little girl to suffer so much.

Someone told me that it is easier to manage sickle cell disease when you are rich. At least, you can afford the drugs and urgent hospital expenses. I used to take Marvelous to the General Hospital to get drugs. At the hospital, I met other parents who brought their children to see the doctor. Some of them looked so messy and stressed out. At first, the hospital was giving the drugs for free, but suddenly, they stopped. It broke my heart when I met some parents that couldn’t afford the drugs for their children. So, I decided to lend a helping hand by purchasing the drugs for them.

When I started, I had two children I was buying drugs for. Suddenly, other people got the information, and we had five patients on our list for free drugs. That’s how the Marvel Sickle Cell Foundation began eighteen years ago, and we now have 150 warriors on board. They live with their families and come to our office once a month to pick up their medications.

I call them warriors because, despite the pain, crises, and challenges they have faced, they have proven to be more than conquerors. Although, in the last few years, we have lost some of our patients to complications such as leg ulcers, we are still grateful to God Almighty for the survivors so far.

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The Marvel Sickle Cell Foundation (MSCF) is located in Ogun State in south west Nigeria. We were giving free drugs for eight years before we got registered officially ten years ago. We usually meet on the third Saturday of the month, and when we come together, we celebrate one another and give God the glory for giving us life. For those who are absent due to crises, their drugs are sent across to them.

One of the challenges sickle cell victims face is stigmatization from family and friends. Most African parents believe sicklers are witches, or evil children sent to torment their families. I heard about a man who chased his wife and child away. I have also seen some fathers who accused their wives of getting such children from water spirits. A mother once asked me, “Why does my child fall ill just after I have collected my monthly salary?” I know it hurts to work throughout the month and use the salary to buy drugs for a sick child. The blood of a sickle cell carrier breaks down every 28 days, unlike other genotypes that break down every 30 days. That is why sicklers always fall sick towards the end of the month.

In my case, my family deserted me and told me that no sickler had ever existed in their lineage. Did you know that someone once asked me why I was wasting my time and money on a child who would die anyway? I told her that everyone’s life is in God’s hands. Moreover, even healthy people die every day.  So why should anyone try to taunt me by saying my daughter would die?

I believe there are certain things that God uses to get us out of bad situations, and I believe Marvel Sickle Cell Foundation was one of the things he used for me. My service to humanity is a covenant I made with God. I told Him that, as long as my daughter remains alive, I will not stop helping other people, and guess what? In all these years, God has been faithful. Marvelous is 23 years old and she is studying Criminology. She is writing her final year project and I must confess that she is the smartest girl I have ever seen. She loves literature and has many unpublished books. I feel blessed to be her mother because I found my purpose in life through her.  God used her to rewrite my story for good.

Another mistake people make is to assume that God can only work in a particular way. Why did I say that?  There was a time when I noticed that a particular patient had stopped collecting drugs. I contacted the family and guess what they told me? They took the child to a prayer house, and after the prayers, the man of God advised them to stop all treatment and have faith in healing. Well, I don’t doubt the possibility of receiving a miracle, but I feel you shouldn’t stop your drugs after prayers. God can also give you sound health through the use of drugs. I believe ignorance is the worst disease, and if people are properly educated, then the misconceptions about this disease will be eradicated.

When we started, I funded the foundation with the money I earned as a caterer and farmer. However, as the number of patients increased, we needed more funds to buy drugs. So I started seeking financial assistance from friends and family. In the last few years, many wonderful people have generously supported us with cash, donations, and prayers. I also have great online followers who donate drugs. It gives me so much joy to know that these people trust and believe in what we are doing, and because of them, MSCF has progressed this far.

We have not received a single grant from either local or international bodies. Also, we have not contacted the government to seek assistance or recognition. I am not a politician and I don’t want any political recognition that will negatively influence the main goal of the foundation. Regarding awards, in the last few years, Marvel Sickle Cell Foundation has received several awards because we are really touching lives for good.

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The Marvel Sickle Cell Foundation is my spiritual calling in life, and I feel so happy fulfilling my mission. Initially, my daughter’s condition was a problem that made me cry, but since I decided to reach out and help others dealing with the same condition, I feel so blessed. Have you ever made someone cry with joy because you touched their life? That’s what we see at MSCF. Most of the beneficiaries pray for me until they cry. The only time I feel sad is when some warriors fail to come for their drugs. I get scared and start wondering if something bad has happened to them. Sometimes I take the drugs to the houses of warriors with leg ulcers if no one comes to pick them up. These are all the sacrifices I make that give me fulfillment.

My story would be incomplete without mentioning my husband. He has been my greatest support. Mr. Agbaje assists us at MSCF. He is involved in everything we do here. As an orator, he is always in charge of sickle cell anemia enlightenment campaigns and seminars. I don’t think I would have come this far if he wasn’t holding my hands. I still remember those days when I felt like giving up, and suddenly he held me up and revived the passion in me. I’m so lucky to have him in my life.

Gone are those days when our parents got married without performing the necessary medical screening. I would advise every couple to check their genotype before getting married. Go to several hospitals and be sure that both of you are compatible. Many marriages have broken up today because of this issue, and many children are suffering because of the mistake their parents made. So don’t take that risk. Also, if you have a child or know anyone suffering from sickle cell disease, please don’t stigmatize them. While they are still alive, please give them a reason to be happy.

My final word of advice is for the women reading this story. Whenever I see women who have two hands and legs begging on the streets, I wonder what exactly their problem is. I always tell people to live their best life, and to do that, they need to be financially independent. No woman should be idle. Even if you are married to the world’s richest man, put your hands to work and make yourself wealthy.

A life without dreams and purpose is meaningless. If I wasn’t earning enough money, then it would have been difficult to manage MSCF. So, money can help you achieve your dreams. If you were inspired by my story, then this is the best time to find your purpose in life and start living it today. Don’t postpone it any longer. At first, it might seem unachievable, but if you believe in yourself, then you can do it. I wish you the best of luck.

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