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Stories

These stories illuminate the daily struggles of individuals impacted by sickle cell disease. They give voice to those who often go unheard, living in remote communities in Africa and lacking access to proper healthcare. These heartfelt stories paint a picture of the challenges faced by those living with sickle cell, and encourage us to take action. We hope that our impact stories will inspire you to join us in supporting those affected by sickle cell disease in Africa.

These stories we documented in 2020, ages are from the time taken.

Joy Danjuma
age 9

Joy lives in rural Kubwa with her grandmother known as ‘Ma’ Danjuma or Mrs Danjuma. She was diagnosed of sickle cell anaemia at the age of 5. Her parents abandoned her as they couldn’t cope with the challenges that came with her health condition due to their lack of finances. So when they stopped making contact with Joy, her grandmother took her in full time to care for her and is her primary caregiver.  


Her story moved us as she told us life has been extremely hard for her without her parents. But also, she lives in abject poverty so living with sickle cell and the cost of care is extremely difficult. Whenever Joy is having a crisis, they would go to the hospital, but the hospital demands upfront payment, so her grandmother is left scrambling for funds. When her grandmother is unable to raise money for her hospital care when she is in a crisis, she doesn’t go into hospital which presents a risk to her life.  She stays at home in excruciating pain, resorting to cheap basic ineffective pain relief or native herbal concoctions until it goes away.

She tells us she cannot remember when she has not ever been in pain or in a crisis. Her grandmother tells us due to financial difficulties; they hardly eat well which is an added difficulty to Joy’s health challenges. Sometimes, Joy is out in the streets begging strangers in her community for spare change in order to buy a meal. Joy at a very young age as a child has had a tough life. She tells us she has had countless lifesaving blood transfusions when she was unwell because of how anaemic she had been in the past. Ma/Mrs Danjuma, Joy’s grandmother tell us she is pleading with the local and national government of Nigeria and even individuals who hear her story to help her granddaughter, Joy because in her words “she is afraid that Joy won’t make it, and if the sickness doesn’t kill her, then starvation could’.

Peter Daniel
age 10

Peter Daniel, born to Lydia Samuel, is 10 years old.  Lydia had 6 children [2 girls and 4 boys] Peter is the only survivor of his siblings. They were all born with sickle cell. Peter was diagnosed when he was born, Lydia told us she has faced so many challenges giving birth to children who all had sickle cell. Her husband fell permanently sick because of the death of their 5 children. Lydia told us she didn’t have any knowledge of the condition and so didn’t have genetic testing before she got married. She tells us she couldn’t believe she gave birth to 6 sick children. They were always sick, in pain and on blood transfusions. When her children clocked the ages of 13-15 years, they all died. “I do not think I can survive losing another child, my only child”.

 

Lydia explains that they live with a lot of need and have significant financial challenges which make it extremely difficult to look after Daniel when he is unwell or buy his medication and pay for treatment. ​She tells us that Peter regularly refuses to take his medication which breaks her heart. When we talked to Peter, he told us said that he is tired of taking the same medicines every day and that his condition stops him from doing certain things that his peers do; like playing football. He loves playing around with his friends, but he tends to get a crisis after playing so he avoids his friends and stays at home to prevent having another crisis. “It’s isolating”, he explained. Peter Daniel tells us he struggles with his chest and leg pains when having crisis.

PETER PASSED AWAY IN 2020

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Idris Ibrahim
age 2

[Mrs Sefia Ibrahim – Mother]

Mrs Sefia Ibrahim and Idris Ibrahim are from Madala in Niger state, Nigeria. His older sister died of sickle cell anaemia at the age of 5 years old. Sefia tell us…

 “It was not up to one year I lost my daughter to sickle cell, I was dealing with the devastating loss of her passing and then discovered that my son Idris also has sickle cell anaemia.
 

His whole body would start swelling up and he would be in a lot of pain for no reason known to me I took him to the hospital for a test where they confirmed that he is a ‘sickler’. When my first child was diagnosed with sickle cell anaemia my husband and I were advised to go for a genotype test where they told us that we have the same genotype AS and at risk of having a sickle baby. When we found out it was too late, I had already given birth to two ‘sicklers’ and lost one to the disease.
 

I have so many challenges taking care of him, because sometimes when he is sick, we are unable to take him to the hospital because there is no money for healthcare. It was lack of money that made us lose our first child, because we couldn’t afford to take her to the hospital or buy her medicine when she was sick. I am calling on the government and individuals to help ‘sicklers’ in this country, I don’t want to lose another child to sickle cell”.

The Musa
Family

Hadissa Musa is a mother of 5 and 3 out of her 5 children live with sickle cell. She tells us about the challenges she is facing taking care of three children with sickle cell. In her words: “when my husband and I got married, we didn’t check our genotypes, in fact we didn’t have any knowledge of what this disease was then. When I gave birth to my first born, she was tested, and it turned out she didn’t have sickle cell. My second child, Isma was born with sickle cell, my third child was sickle free and then my last 2 children Farida and Nura were born with sickle cell. It hasn’t been easy for me and my husband financially; my husband doesn’t have any tangible work or occupation that brings in any substantive income. I myself, trade yams and this trade only generate petty change which is close to nothing.

 

You know, sometimes they all get sick at once and they won’t be any money in this house to take them to the hospital or even buy them medicines in our local chemist. It’s hard as a mother seeing your kids in pain and you are unable to do anything to help them. Just the other day Nura had a crisis, they had to give him blood in the local government hospital, My husband and I had to go borrow money from neighbours and friends in order for them to treat him and give him blood.

 

I am begging the government to help bring in people that will come into communities such as ours to teach people about checking their genotypes before having babies because most of us are not educated, we don’t know anything about genetics. We don’t even know much about this disease. We are the forgotten ones because we live in rural communities. I have found out my younger sister’s kids have sickle cell. If we had been educated about this issue, would have avoided having kids with sickle cell and not bring children into this world to suffer”.

Charity Daniel
age 30

Charity lives in rural Kubwa Abuja. She doesn’t know when she was first diagnosed with sickle cell. She is a baker and a hairstylist undergoing training. She tells us: “Living with sickle cell has not been easy” As a baker, she spends a lot of time in a kitchen which can have an impact on weather conditions (becoming too warm) which can trigger her crisis. This isolates her from friends and her social life suffers. She told us some of her friends are unaware of her condition due to the stigma of sickle cell in some communities.

 

So, she ends up avoiding them to prevent them asking her questions about her health. When she is a crisis, she is not able to get hospital care due to her lack of financial means. She resorts to self-medicating by buying cheap basic pain relief medicine at the local chemist which doesn’t always relive her pain or subside the crisis.

She tells us she manages her condition through good nutrition and healthy food to avoid a crisis and the costs that come with one. Like many warriors, exertion of her body can trigger a crisis, so she avoids any strenuous activities in order to avoid having a crisis. Her advice to people living with sickle cell anaemia is that they should invest in eating healthy and taking their medication if they have the means.

She also tells us she has not allowed her health issues define who she is and that she strives to be happy, no matter the situation and that’s how she clings to hope.

She wants to help younger warriors rise above the disease.

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Usman Abdulrahman
age 19

He is about to write the WAEC entry examinations into secondary school. Abdulrahman was diagnosed with sickle cell anaemia at the age of 7. He had his first crisis and was rushed to the hospital where he had series of tests done on him and they found out that he had sickle cell. He told us that was the first and last time he had blood transfusions. He is the only child with sickle cell in his family and he is always in the hospital.

 

He tells us “I am always tired and sometimes feel weak because I can’t do most of the things my mates are doing, and I hate how weak and vulnerable I am whenever I am sick. The pain sometimes is unbearable for me, but I thank God that I don’t fall sick often. I love playing football with my mates but because of my condition my parents forbade me from playing out because they feel like it will exert me and cause another crisis which they can’t afford as I will need to go into hospital which needs money.
 

But sometimes I sneak out and play with my friends and when I start getting tired, I stop and rest and my friends know when I need to rest so they don’t pressure me to play. I am grateful for the friends that I have. They know about my condition, so they try to be understanding. I am training to be a fashion designer and am really working hard so as to be able to have my own fashion house one day and help my family as well.

 

My advice my fellow warriors is to not be ashamed of themselves because they have sickle cell. It’s not their fault neither is it a death sentence. They should be proud that they are stronger than others because it’s only a strong person that can go through to the pain we go through and still come out smiling and surviving like everything is alright”.

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[Halira Sani – Mother]
 

Halira tells us…
"Zelia is 7 years old…Since I gave birth to my daughter Zelia, she has always been sick, she hasn’t had a break. We found out she has sickle cell anaemia when she was 1. She has been in and out of the hospital since then. When she has a crisis, she is always in constant pain, sometimes she complains of pains on her hand, chest and waist, she also gets a swollen belly when she is having a crisis. I fear for my daughter’s life honestly.

 

Whenever she has a crisis, we are always afraid that she won’t make it, but somehow, she gets to bounce back to life. I always think she is such a strong girl. I am trying my best to manage her condition as much as I can and pray that I don’t lose her to sickle cell”.

ZELIA SANI

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I am studying business administration and in my first year. I have sickle cell anaemia. We found out when I was 14 years old. I had a very serious crisis then. I was admitted at Abacha Barracks Hospital Abuja where they ran a series of test and found I had a sickle cell.

That was my first crisis. I had a blood transfusion before I was discharged from the hospital. I had 3 pints of blood on my first admission and on my second, 2 pints of blood. Living with sickle cell anaemia hasn’t been easy for me, I go through a lot of pain whenever am sick, it’s as if my whole body is on fire and it always comes with a horrid fever. I can’t do any work that requires exertion especially like my peers. People make fun of me in university because of my body size, I don’t look like am 20 years old because of my condition and late puberty.

 

I try as much as I can to drink lots of water, take my medication on a daily, also eat healthy foods and take care of myself to avoid getting sick because I am far from home, and I can’t afford for my family to be worried about me when I get sick.

LOVETH YAKUBU

[Luciana Isam – Aunt]


 

Hassan is 16 years old; he attends secondary school at Mabuchi, Abuja. He lives with his family at Mabuchi community in Abuja. Hassan was diagnosed with sickle cell anaemia when he was 2 years old. His aunt tells us “He is always sick”. His family told us they are scared for his life.


 Whenever Hassan starts having a crisis, his family doesn’t hesitate to take him to the hospital. He has never had a blood transfusion. Hassan said that he is very grateful that his friends and family do not treat him differently rather they encourage him to be as normal as them and show him love, and because of that he has a reason live.


His family makes sure he eats healthy meals regularly and takes his medicines daily. He said the love and compassion he gets from his loved ones is everything to him.

HASSAN WAZIRI

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[Blessing Yohanna – Sister]
 

“My name is Blessing Yohanna. This is my younger sister, Eunice Yohanna. She is 13 years old. She was diagnosed with sickle cell anaemia when she was 3 years old. It hasn’t been easy for her and our family. She is always having a crisis.  We are always in and out of the hospital nearly on a daily basis and it has really affected us as a family emotionally and financially; because my family is always required to pay Eunice’s hospital bills when she goes into hospital.

 

I and my siblings have sometimes been suspended from school, because our school fees haven’t been paid by our parents as they have to priorities her health care costs. We totally get this because almost all our parent’s little savings are being used to clear Eunice’s hospital bills. She experiences pains everywhere, (even her fingers, and legs) when she is having a crisis.

 

Because of my family’s frequent visits to the hospital, people are always telling us to leave her alone to die, that whatever will happen will happen. But I thank God for the kind of parents we have because they didn’t listen to them, they are doing everything they canto see that she is still living and has a decent life…”

EUNICE YOHANNA

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[Memona Samuel – Mother]
 

My name is Memona Samuel, and this is my son Daniel Samuel. He is 8 years old. I found out my son was a ‘sickler’ when he was 3 years old. He was always sick after I gave birth to him, so we took him to the hospital where they confirmed he has sickle cell anaemia. I didn’t even know what that (sickle cell) was until they explained it to me and my husband. 

I was heartbroken for my child. They gave us medicines and taught me how to manage his condition and we went home. Since then, I have been trying my best to manage his condition and keep him healthy. When people heard that my son is a ‘sickler’ they felt bad for my family. Some people advised me and my husband to stop wasting our money on him that we should just leave him to die that in fact people with sickle cell do not survive.

 

We didn’t listen to them. I try as much as I can to stock up his medicine and feed him healthy meals. He is always sick and whenever he has a crisis, he goes through a lot of pain, so he is always in and out of the hospital, I don’t believe that my son won’t survive. I have faith that he will make it and grow old and even have his own family, that is my prayer for him every day.

DANIEL SAMUEL

Favor was diagnosed with sickle cell anaemia when he was 10 months old.

When Favor turned 10 month’s old, I started noticing that his body was swelling up, (we explained this is a complication in sickle cell) … I was confused and scared, I sought advice from family and friends, and they rightly advised I take him to the hospital. I took him to the local General Hospital in Kubwa and I was informed he was sickling and they had to admit him. But because they did not have a specialist there, they referred me to another hospital in Gwarimpa.

 

After carrying out a series of tests on him, they discovered that he had sickle cell. I didn’t know what sickle cell anemia was at that time so they had to educate me and his father and how to take care of him. I was devastated and confused.  I took the medication prescribed and went home.

Favor hardly has a crisis but when he does it’s always the swelling and body pains that am worried about, but I believe God that my baby will survive this disease. If there was one advice I had for other mothers with sickle babies and for all sickle cell warriors out there is to ensure you comply with your medication. There is a reason why medicine was made to help cure diseases. I advise everyone to test before planning to have babies”.

FAVOUR JOSEPH

Jeanette told us: “When I got married, my husband and I didn’t go to the hospital to get a genotype test, so when I found out that my kids were born with sickle cell, I was devastated. I wasn’t happy; I started having regrets as to why we didn’t just check our genotypes, but it was already too late. You know, I hate seeing my kids in pain, their sickle crisis come with a lot of pain and suffering, sometimes they end up having a swollen belly. I can’t imagine how this universe can allow children go through so much through a disease they didn’t ask for. Just last month, Emanuel had a crisis and he had to have two pints of blood to keep him alive. I thank God for my daughter Success because she hardly suffers a crisis compared to her brother, Emmanuel.

 

My husband and I sometimes have financial challenges when it comes to taking them to the hospital during their crisis to get treatment. We feel hopeless many times. I love my kids and I don’t want to lose them; I always have this fear of losing them to sickle cell and I pray it doesn’t happen. My husband and I agreed to not bring another child into the world so as to spear him/her the pain and suffering their siblings are going through and it will give us more time to take care of the ones we have. I urge people to go for genetic testing and check their genotype before having children to avoid what we are facing now”.

KURES (FAMILY)

David is a student at Morel Junior Secondary School in Abuja, capital city of Nigeria. David doesn’t know at what age he was diagnosed with sickle cell. He loves football and plays as well. He is training as an apprentice to become a professional welder. He says this will support him to look after his family and contribute towards paying for his and his little brother’s medicines to help manage their sickle cell. He told us his father abandoned them when they were little because both he and his little brother were born with sickle cell and as the first child, he felt responsible for his younger siblings. This is why he started working odd jobs at an early age to be able to foot bills for his family.

 

He tells us that living with sickle cell hasn’t been easy, although he has only been admitted twice to hospital since he was diagnosed with sickle cell, he regularly has a crisis at home and is more likely to manage his crisis and self-medicate at home because his family can’t afford to take him to the hospital. He tries to live a healthy life and avoids strenuous activities. In school, he couldn’t participate in any sports with his peers because of his condition and that made him sad and isolated. He advices other sickle cell warriors to live a healthy life and they shouldn’t allow their condition to define who they are. He says strength is everything you need to go through sickle cell.

DAVID IBRAHIM

Kennan was born with sickle cell anaemia. He is David Ibrahim’s younger brother. They both live with sickle cell. Their mother, Lami told us: “When I gave birth to my kids, they were healthy and robust. They didn’t show any signs of having sickle cell until later when they started falling sick. I took them to the hospital where it was confirmed that they had sickle cell. Having two kids with sickle cell hasn’t been easy for me you know. My husband left me and the kids because of their condition. Then, I thought he was the one with ‘sickle cell blood’ in him, but it was later on that I found out that it was as a result of both of us having the same trait of genotype. If I had known what I know now; about checking one’s genotype before marriage, I wouldn’t have gotten married to their father.

 

No mother wants to bring a child to this world to suffer; these kids go through a lot of pain and suffering when they are having a crisis. I try as much as I can to feed them healthy food and stock up their medications because heaven knows I cannot afford to take them to the hospital when they are sick so I try to keep them as healthy as possible to avoid going to the health centre or hospital. I am proud to be their mother. They are hardworking children and very strong willed. I am begging the government to help us because the financial burden is becoming too much for me alone to bear.

KENNAN IBRAHIM

Jeptha is a twin, her condition has distorted her growth, and she looks like a younger child. When she was a toddler, she was the twin who always got sick, so her parents took her to the hospital where it was confirmed that she had sickle cell. She was only 2. Whenever she had a crisis, her belly would swell up a lot. She would be in excruciating pain on her lower body. Her mum, Regina complained of their financial crisis. She tells us she cannot afford to take Jeftha to the hospital whenever she has a crisis. Jeftha developed leg ulcers badly and this has still not been treated. This led to Jeftha having to give up secondary school for a whole year. Jeftha tells us she would like to help her mum more, but she cannot help with simple normal chores around the house to avoid exerting herself. So, her siblings do all the helping.

 

She has to avoid doing a number of things because she is frail and fragile. This brings her down mentally & emotionally, she is very sad and isolated when she sees her siblings and friends go to school while she cannot due to her painful leg ulcers which has made it impossible for her to walk properly; has limited her mobility significantly, socially isolated and makes her feel depressed. Jeftha tells us she is teenage girl who should be at the prime of her life and education, forming her dreams but sickle cell has made it impossible for her.

JEPTHA JERRY

Impacted Lives

At Fit to Achieve, we are dedicated to making a positive difference in the lives of those we serve. Our impact has been felt in many communities throughout West Africa, especially in Nigeria where many sicklers struggle with health issues due to poverty and crisis. We strive to give hope to those facing health crisis, particularly those with blood issues like sickle cell. These are the true lives of our warriors.

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