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A sickle cell survivor, Balikis Salami, 24, who lost her right arm and her brother to sickle cell complications, speaks to VICTORIA EDEME on her journey as a survivor
Can you share your journey of living with sickle cell and elaborate on the impact it has had on your life?
I am Salami Motunrayo. I am 24 years old. I stay at Irolu Remo, Ogun State. I am from Ikenne Local Government Area in Ogun State.
It hasn’t been easy. The pain associated with it is too much. Talking about my sickle cell struggles is not something I enjoy doing. When I was five, I always complained about pains in different parts of my body. We always visited the hospital while I was growing up. In secondary school, I cried and prayed for death while having a crisis. Even people around us will say I have started again. If I had the crisis for two weeks, I would neither eat nor sleep during those periods. My struggle with sickle cell has affected my memory. I don’t remember things. Sometimes if I’m in the room and I go to the living room to pick something, I forget what I want to pick when I get there. So when I remember later, I’d go again. I even had to drop out of school twice because of sickle cell complications.
How did sickle cell complications affect your education?
After secondary school, I went to Benin Republic to further my education. There, I studied nursing. It was a four-year course but I was in 200 level when I fell sick. When I went to the school health centre, I was told that it was malaria. They treated me and gave me drips and medication. Still, I wasn’t getting any better. I then called my mum and she came to take me back to Nigeria. When we came back to Nigeria, my mother took me to Olabisi Olabanjo University Teaching Hospital. When we got there, they ran tests on me, gave me injections, and admitted me. I spent some weeks there and I was discharged. After I was discharged and I got home, I noticed that my right knee was swollen. I told my mum about it and she was so frustrated. She took me back to OOUTH and the doctors were surprised. After running another round of tests and other medications, I was told that I had to undergo surgery or risk amputation. That was my first surgery in 2018. My mum was financially stable then, so she paid for the surgery immediately. During the surgery, nothing was found inside the knee, except pus. After surgery, I was discharged, but couldn’t go back to school in Benin Republic because of my health.
Which other school did you attend after you dropped out?
I later gained admission to study Environmental Health Technology at Ogun State College of Health Technology, Ilese-Ijebu. I was about to enter ND 2 when I was amputated and could not continue with school again.
Could you share more details about the circumstances surrounding the amputation?
After ND 1, I and some of my classmates were posted to Aiyetoro Local Government Area for a three-month industrial training; It was 2021. I and three girls were given a room at the posting. In the room was an air conditioner and a fan. So, as a sickle cell patient, I couldn’t sleep with both of them switched on, so I told them to either turn on the AC or the fan. When I’m exposed to too much breeze, I start feeling body pain. After spending a week at Aiyetoro, I had a strange dream one night. While sleeping, I dreamt that someone wanted to shoot me with an arrow. As the person fired the arrow at me, I just woke up from sleep and shouted. My roommates also woke up because of my screams and asked me what happened. I was sweating profusely and my clothes were drenched. My roommates were surprised to see me drenched in sweat because I was the one who told them to turn off the AC. I told them about the dream and they told me to pray. I decided to go and take my bath because of the sweat. As a sickle cell patient, I always bathe with warm water. But on that day, I couldn’t boil water because it was 1am then. I went ahead to bathe with cold water, then called my mum. My mum told me to pray. I and all my roommates prayed before we went back to bed. When I woke up, my legs and hands started itching, and I began to scratch all of my body. Shortly after, I found out that blisters were all over my legs and hands, as if hot water had poured on me. My friends were all surprised. So I went to the health center at the Local Government Area where we were working, and the medical personnel burst all the blisters and applied injection powder. On the second day, I went for a dressing of the wounds. The day after, the wound started getting worse and I was advised to go back home. So one of my colleagues took me home. When I got home, my mum took me to Babcock University Teaching Hospital. I was admitted for over two weeks. At that point, the wound on my right hand began to expand and it became so bad. The wounds in my left hand and legs had started healing. There are still scars on my left hand and legs as of today. The hospital discharged me but the wound on my hand was becoming worse. My mum was so confused about the situation. My mum’s sister then told my mum to take me to a pastor for prayers. I was taken to the church and was given a white soap to take my bath. Still, the wound kept deteriorating. We started going from one place to another, seeking help and spending a lot of money in the process. Some people even scammed us. After trying different places, I was taken back to BUTH in 2022. The doctor then said that I would have to amputate the hand, as that was the only solution. I and my mum started to cry because we had spent so much already. It was during this process that I dropped out of school.
When you were told that your hand was going to be amputated, how did you feel?
I was shocked. I questioned God. I was wondering why I had to amputate my hand as I wasn’t involved in an accident. I cried a lot. At last, the hand was amputated below the elbow. After the amputation and I was discharged, I was told to come back a day after being discharged. When we got back to the hospital for dressing, they opened the wound and saw that it had blackened. The doctors were surprised because that wasn’t how the wound supposed to look. They, however, told me to keep coming for dressing. As I continued with dressing, the wound was not getting healed. The doctors then told my mum that I had to amputate the hand again. At that point, all our money had finished. My mum had sold her car and land while raising funds to treat me. She sold all she had. My mum used to sell foodstuffs behind Adeniji Police Station, Lagos Island. I always followed her from Ogun to Lagos. My mum had already bought two freezers and a generator and was planning to start the business. A customer had advised my mum to send me abroad then and I went to get my passport. My mum was also gathering money for the next stage of my travelling process when we were informed about my amputation. The money that my mum was saving to send me abroad was used for my treatment. She borrowed money and I got support from some people I met online. My mum did not only sell her car but also sold her land, the freezers, and the generator she wanted to use for her frozen food business. We were left with nothing. That was why I could not travel abroad up till now. The passport I did then had expired and I’m in the renewal process now. When I was told that my hand would be amputated again, there was no money at all.
How were you able to raise funds for the amputation?
My second amputation was sponsored by someone I met on Instagram. He paid N300,000 into the hospital account for the amputation. Some people online also started helping me. That’s how I was able to raise funds. I was later told that after the second amputation was carried out at the theatre, I did not wake up. The doctors pronounced me dead. They informed my mother that after the second amputation, they had lost me. My mother refused to accept the news. My mother told me that she prayed and rejected the news. Even now, I don’t know how I was revived and brought back to life. During the first amputation, the doctor had helped us with N200,000. The third day after the amputation and the bandage was removed, the doctors were surprised that the hand was healed and didn’t look like a fresh amputation. The wound had closed, and the doctors congratulated my mum and said they hadn’t seen such before. But I still remember how I also overheard the doctors saying my sickle cell condition complicated the amputation. Till now, I always think that my two hands would have been complete if I wasn’t a sickle cell patient.
How have your friends been of support to you?
I started going out two weeks after the amputation but I realised my friends avoided me.  I don’t have friends again, as everybody has left me. They didn’t want to hang out with me again and stopped talking to me. They said I’d disgrace and embarrass them. Even when I was in school, my roommate who has been my friend since my secondary school days told me that I should go and rent another apartment because she claimed I was smelling. That was when I had the wound in my hand before the amputation. When I sat in class, I would be the only one sitting on the bench.
Do you have siblings?
My mum and dad are both AS. I am the first child. We were five children. I and my immediate younger brother are sickle cell patients but he died when he was about two years old. The remaining three are okay; one is AA, and the other two are AS.
Do you remember the circumstances surrounding your brother’s death?
I was in primary school then and we were staying with my paternal grandmother. It was on a morning. My mum had bathed me and my brother as she was preparing us for school. I just noticed that my brother lay on the floor and I saw my mum carry him and shake him. As she was shaking him, she was calling his name repeatedly. As a child, I wondered why she was shaking him and was just staring at her. So she told one of our neighbours to take me to school. When I came back from school, I met so many people in our house, but everywhere was silent. I didn’t understand what was going on. I asked my mum where my brother was and she told me he was at my aunt’s house. I asked them if I should go and meet him but they refused. They told me that he’d be brought back home. That morning was the last time I saw him. As I got older, I later learned that he died on that day. He was a sickle cell patient too.
You’ve been talking about your mum and grandmother. What about your father?
My dad doesn’t stay with us. He’s based in Lagos and is not financially buoyant. From the start, it had been my paternal grandmother supporting my mum. My dad only comes home once in a while. My mum is used to taking care of us by herself. The only helpers I have are my grandma, my mum, and people who help me online.
What support do you need?
The only support I need is for the two things I wanted to do before the amputation made us spend all our money. I need support for my mum to get a shop and begin her frozen food business. I also want to fulfill my dream of travelling abroad.

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