The story of a Samira Sanusi resilient young woman who against all odds, fought and survived the sickle cell disease.

 By: Fatima Togbe

We recently sent out a message through social media asking all our Sisters who feel like they have a story to tell to email us at Hayati. I was not sure what to expect to be honest but I was excited nonetheless to receive stories from Sisters around the world. As I personally went through some of these stories, there was one in particular that struck a major cord, the story of Samira Sanusi. Her story was so moving that I decided to meet her in person. So we set a date and time and met up for drinks.

I had already looked her up and gone through her blog, so I knew a little bit about her or at least what she looked like. When she arrived, I found her a lot more beautiful in person. She walked in about 5’5″ in height and small frame just like me so I loved her right away. She wore a fashionable abaya, carried a matching bag and had a smile on her face to seal it all.

Once we got through our introductions, she began telling me the story of how she fought and survived one of the deadliest diseases, the sickle cell disease. She took me around the world as she detailed her search for a cure. Her journey ended up being more than a search for a cure but also a search for God and herself. Along the way she discovered an unrelenting strength within her that helped her keep a smile on her face even through hard times. Seeing her walk in with just one crutch as an aid, I was amazed and inspired by how far Samira had gone. After twenty-five surgeries (minor and major), emotional trials, tests in faith and years away from her family, Samira is completely healed from sickle cell and is able to walk.

Her childhood, unlike many, was filled with hospital visits, constant health crises and surgeries. She did not have the chance to go out and play with her friends or even attend school frequently because she was too weak to do so. Instead, she spent a lot of her time reading and looking forward to those few days of school she could manage to attend. After years of being in Abuja, Nigeria, with doctors who were unable to help her any further, her father decided to fly her to Saudi Arabia where Samira spent months going through surgeries to re-do the ones that had been improperly done in Nigeria.

Being in Saudi was very tough for Samira as she was without her family and friends and was out of school. Once her surgeries had been properly redone, the doctors in Saudi concluded that they would have to amputate both of Samira’s legs in order for her to combat the disease. Her father, who has always been by her side, refused to accept their diagnosis and sought a second opinion world-wide till he found a hospital in Austria that informed them that there was indeed a cure, although risky, that would not involve amputating her legs. So they flew to Austria and that was the beginning of her 7 year stay there.

In Austria, Samira and her father learned more about the procedure that could cure her Sickle Cell Disease: a bone marrow transplant. A bone marrow transplant involves taking healthy stem cells from the bone marrow of one person and transferring them to the bone marrow of another. Bone marrow transplants are often needed to treat conditions that damage bone marrow (it is no longer able to produce normal blood cells) such as sickle cell disease, leukaemia, and some immune deficiency diseases. Once the transplant is done, the new stem cells take over the blood cell production and should begin producing normal blood cells. Bone marrow transplantation is not 100% guaranteed to cure sickle cell disease, however it was a risk Samira and her father were willing to take.

At this point, Samira was being home schooled by tutors who would come to the hospital to work with her, and since the procedure was one that could not be performed right away, she had of some time on her hands. There were a series of surgeries and extensive physical therapy she needed to complete in order to prepare her body for the transplant. So Samira spent the months leading to her surgery in a medical institution in Graz, Austria, where she says was a period of utter darkness in her life. She was unable to go outside for months, she was separated from her friends, family and the outside world and she felt like all her memories of were being replaced by long days and nights within hospital walls. She managed to stay connected to the world through letters her father would send her, the television, through which she learned to speak German and creative therapy sessions where she could engage in activities like writing and jewellery making.

During an interview with Genevieve Magazine in August 2011, Samira explained how, “She spent so many months in bed that some of her muscles began growing short and also suffered infections”. Consequently, she had to do physiotherapy which was close to a nightmare. She explained in her interview that “it was mentally frustrating for her to try to re-learn functions that had come naturally to her as a child such as sitting and standing and there are no words to describe the physical pain she endured during her therapy sessions”. She screamed and cried during these sessions she told them in the interview and “whenever the time for her physiotherapy sessions approached, she dreaded the tick of the clock or footsteps of her physiotherapist like the proverbial plague”.

Many times she would question God and her life and wonder why everything had to happen to her of all people. She comes from a religious family, where she was thaught to always perform her prayers and also attended Islamic school, so for her to question her faith, she had really hit rock bottom. In our interview she recalled visits from local churches while she was in the hospital where they would pray for her and try and convince her that if she believed she would walk again, she would, and all she had to do was just stand up. Once, she accompanied them to a church service where she witnessed some form of a miracle. Someone who was blind began to see, and as he did, they called on people in the audience to simply accept Christ and be healed. This was a very trying time for her, because she was frustrated by not being able to walk and drawn to the possibility of being healed like the blind man before her; but she held on to her religion and put all her faith in Allah swt.

Samira’s brother was a match for the bone marrow transplant, so he sacrificed some months of school and underwent a few surgeries and treatments in preparation for the transplant. The transplant itself is non-invasive. It does not require any cuts; instead it’s fairly easy and closer to a blood transfusion. After the surgery, Samira and her brother had to wait for a period of one hundred days to make sure her body did not reject the transplant. Those one hundred days were the final stretch for Samira and her family because once they were over, they received good news that Samira had been completely healed from Sickle Cell.

Now Samira is finishing her degree in Business Administration online which allows her to be at home. She spent so many years away from her family, that being home with them while she finishes her degree is a form a therapy and healing process for her. Being home she is now able to participate in all the family events she missed out on during her time away such as weddings, Eid festivities, birthdays and more; and essentially recreate new memories. I asked Samira what she sees herself doing once she finishes her degree and she told me about her dreams to be a fashion designer and most importantly work with NGOs to help people affected by sickle cell disease.

This gift we call life often times seems very complicated. It can be hard to understand why certain things happen to you and on certain occasions you may feel like life could not get any worse. However I have found that when you do what you are meant to do, which is, pray, trust Allah swt with your life, pursue an education and knowledge, respect your parents, lead an exemplary life and believe that Allah swt will not give you a battle he knows you cannot win, life becomes so much easier. Samira went through so much overcoming sickle cell disease and she survived it with a stronger faith in Islam, greater appreciation for her family and an understanding that life is to be taken one day at a time and with this, to everything she says “Alhamdulillah”.

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