“I was born on February 28, 1989, as a sickle cell child, and so far, my life has been an unending episode of pains as I live in and out of the hospital.”
Linus Oota, Lafia
At 29 years old Japheth Ezekiel Marchibi has no desire to live any longer because of the insufferable pains and the never-ending misery of his life as a sickle cell sufferer.
The blood disorder has denied him the opportunity to complete his study and also drained the family’s purse. His parents, both retired schoolteachers in the FCT Abuja, after spending all the savings of their 35-year civil service career, now live like paupers.
Despite all efforts, Marchibi’s health worsens by the day and has deteriorated to the point where the embattled young man now prays the prayer of Job, that he might die and bring to an end his earthly suffering.
He said: “When the pains start, it is like being hit by a tornado. The pain is difficult to describe. It’s right in your bones. You can’t move, eat or talk. You feel it in your back, your joints and in your kidneys.”
His affliction of unending excruciating pains also includes bone and joint complication which led to Avascular Necrosis (AVN) in his left hip, a hard-to-heal ulcer in his ankle and recently a stiffening of his knee bones. A costly surgery to correct his collapsed hipbone has not been successful, leaving the hapless youth presently at a crossroad where he is ready to quit life.
Marchibi, who hails from Akwanga Local Government Area of Nasarawa State, shared his touching story with Saturday Sun amidst tears.
A biography of pain and sorrow
“I was born on February 28, 1989, as a sickle cell child, and so far, my life has been an unending episode of pains as I live in and out of the hospital. My primary and secondary school days were made very challenging by excruciating pains, but I managed to complete my secondary education.
“I became very unhappy and depressed when my parents reveal my condition to me. I wondered why I should be saddled with such a condition. The financial cost and emotional pains that have gone into this dilemma are unimaginable.
“In 2007, I got admission at the Federal University of Science and Technology, FUT, Minna, to study Fishery and Aquatic Management. It was when I was about to commence registration that I was struck by sickle cell crisis and subsequently missed the admission. I stayed at home battling the disease until 2008 when I got another admission to study Statistics at the Nasarawa State University, Keffi.
“I started well from year one and got to the third year before the ailment struck me down again. I missed a lot of classes and continuous assessments. Statistics is a course that one really needs to give attention. It is pure mathematics and missing classes was not good. It got to a point that I could not carry on with the course. It was decided that I should change to a department that I can cope with.
“When I changed my course to Psychology, I was demoted from 300 Level to 200 Level. I was doing well but the sickle cell crisis was still troubling me. I started battling with ankle ulcer, which is common to sickle cell sufferers. It is a kind of wounds that appear on the leg. It starts very tiny, like mosquito bites, and if you don’t manage it well, it goes out of proportion. I was battling with it while attending lectures and I managed to get to 400 Level.
“After I got my project topic, I went home to get some materials to kick-start my thesis. Since then, I have not been able to go back to campus. It started like a fever. Gradually, it affected my hip and joints.
“In October 2014, I was diagnosed with Avascular Necrosis (AVN). My left hip was damaged due to lack of oxygen supply to the bone. Doctors told me I needed a hip replacement surgery with an artificial one because my left hip was totally damaged. We consulted many hospitals in the country. Most of them said they couldn’t perform such surgery with sickle cell ankle ulcer on my leg. The ulcer needed to be treated first before the hip replacement surgery. Throughout 2015, we tried to cure the ulcer to no avail. I was on wheelchair throughout the year, and as a result developed ankylosis, which is the abnormal stiffening and immobility of a joint due to the fusion of the bones. That led to a total damaged of my left knee. At this point, I was I was battling three issues––ankylosis, AVN and ankle ulcer––all on one leg. The pain was too much.”
“Throughout 2015, my parents emptied all they have saved in the civil service to get me back on my feet, but my condition did not improve. In 2016, I met a doctor who has a private orthopaedic hospital in Wuse II. He agreed to carry out the hip replacement surgery without treating the ankle ulcer. In July, he carried the surgery successful. We spent N2.8 million excluding feeding and other things. My father who raised the money is now neck-deep in debt.
“One week after the surgery, I noticed that my left leg was dangling when I attempted to move. An x-ray showed the replaced hip was dislodged. During a revision surgery, the site was reopened at a great pain to me and the hipbone was pushed back into position.
“I was in a cast for a month. My legs had to be separated with an iron rod to make it stiff and that was another painful experience I will never forget. The pain was so much that I could not go to the toilet. I was literally incapacitated but was later discharge and confined to a wheelchair. My knee got damaged and I needed a replacement via surgery. While I was battling that, the hip dislodged for the second time. I felt like dying to put an end to my suffering and pain.”
He Marchibi went back to the hospital and to a worse prognosis from the doctor who declared the surgery site infected because the wound refused to heal. The doctor also declared the inevitability of a second hip replacement surgery.
At this juncture, the Marchibi family has come to the end of their tether, having exhausted all their savings in the struggle.
“So, since 2016, I am living with a dislodge hip, ankle ulcer and knee pains all on one leg,” said a hapless Japheth Marchibi, who, apart from the excruciating pain, also went through emotional agony.
He said: “There was a time I saw on Facebook my mates in the university celebrating their graduation and I cried endlessly on my sick bed. I was traumatized. Graduating from the university had always been my dream.”
The price of ignorance
Saturday Sun also spoke with his father, Mr Ezekiel Marchibi, 68, a retired schoolteacher, who tacitly blamed himself and his wife for the young man’s calamitous life.
The couple got married on December 21, 1973, at a time when prior to their marriage, couples in this part of the world had little knowledge about the implication of genotypes on their future offspring.
“If I have another chance at life, I would carefully verify all the little details about my partner before going ahead with the marriage, but it is late now. We have made our choice and we have to stick by it,” he said.
“From 1989 when Japheth was born till date, he has not known peace as he is constantly in and out of the hospital his entire life. At the movement, I have exhausted myself. I have incurred a huge debt to save his life, and yet, there is no improvement,” lamented Marchibi.
While he believes in miracles, Marchibi, who also suffers from ill health due to old age, has come to terms that death might come knocking at any time.
Said he: “The 45 years of my happy marriage has been crippled by the fear of when death will come knocking on the door. All the same, we are putting our hopes in the Lord for a miracle.”