Meet Niibi Nii, a one in a million sickle cell advocate
The immediate past President of Journalists for Human Rights (JHR), AUCC Chapter, Niibi Nii Martey Botchway Benjamin Jnr is appealing to the Government of Ghana through the Ministry of Health and the Ghana Health Service to run the sickle cells clinic at the Korle Bu Teaching Hospital as a 24 hour facility and also replicate such in all public hospitals due to the volatile nature of the ailment.
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Not knowing what is going to cause your demise is scary enough; but knowing, and having to face it is something very few comprehend, Niibi as he's affectionately called by his friends and colleagues vividly recounts his first brush with death.
"I was about nine years old and had suffered an attack, so my mother rushed me to the hospital. It was in the mid- nineties and before you can get a blood transfusion, you have to fill a form and apply then wait in a queue for your turn.
"This process could take days before you get the blood. I was on admission at the hospital, that I will not name, and my elder brother was at Korle Bu trying to get me some blood. After two days he had still not come with the blood so on the third day the doctor attending to me came to my bed on the morning of the third day and said that I would die by 11 am that morning if I do not get the blood transfusion so I will be discharged so I do not die on their premises. My mother didn’t take me far from the hospital in case my Brother turned up so she took me to a Church compound owned by the hospital and all the children passing by would just stare at me.
My mother would occasionally pinch me to make sure I was alive while she continued praying for me, my brother eventually turned up and the rest is history,” he mentioned.
Being the sixth of seven children, Niibi is the only child with sickle cell in his family. He has had it for as long as he remembers and even summarises his life in one sentence “pain has become a normal part of my life, I expect it on a daily basis”.
As a healthy looking young man in his late 20’s, his life story is more about having the condition and not being dominated by it. Something that requires a lot of strength as he spent one-third of his schooling life in hospital due to his condition.
Sadly the effects are not restricted to being stuck to a bed for days on end, but extended into his social life also had to endure taunts by playmates who sought to hurt him because he was not strong enough. "At age 12, I found myself doing things I should have done at age seven," he said.
Niibi’s condition has affected every decision he has made throughout his life. He had to quit working with the Armed Forces due to medical reasons and having to take on a more sedate career in photography, a decision he doesn’t regret due to his passion for the job and recently completed his studies at African University College Of Communication, where he was the Chapter President of JHR, a Human Rights Activist, an Advocate for Sickle Cells and a passionate Photographer.
At age 12 he attempted suicide to end his pain and put his family out of misery as from a very young age he had to watch his mother suffer to bring him comfort and his big brother who was his blood bank, having to donate as much as 3 pints of blood to him at a point. He was saved by grace as the deadly mixture of what was supposed to prolong his life never entered his body by divine intervention. Shortly after he stopped taking blood transfusions, and research into his condition provided him enough knowledge to go without it, consuming not less than 3 litres of water daily and a vegetable dominated diet has become a lifestyle.
Niibi says it is important to know your status because he has had to end some romantic relationships because the ladies were carriers, thus preventing future complications. He is advocating for the screening of every child at an early age before it’s too late.
Currently, the prevalence rate for sickle cell in Ghana is 25% and, an estimated 2% of babies amounting to 15,000 babies are born with sickle cell in the country.
WHO estimates that 5% of the worlds’ population have traits of sickle cell and 300,000 babies are born with sickle cell annually.
