Jeph: On trail of cure for sickle cell
He was born on June 28 2001, weighing 2.8 kg and by the time he was six months old, he was diagnosed with the sickle cell anaemia. From then, the struggle for survival began. And though for 15 years and eight months, he was permanently going in and out of hospital, he was determined to fight the illness to a standstill.
However, on February 4 2017, he finally succumbed to the cold hands of death after sadly telling his mother he could no longer bear the pain.
That is the story of Jephthah Aireankhue Setonji Ivan Ohiomokhare, one of the many Nigerian children, who have had to contend with the pains associated with sickle-cell anaemia.
Jeph, as fondly called by her mother, was different from other sickle cell sufferers. Unlike the usual lean physical frame, weak bones and sometimes protruding stomach, Jephthah was stronger than usual. He could engage his mates in arms wrestling, walk on his arms, lift weight and would not tolerate being exempted from endurance trek and such arduous physical tasks by the school.
He also talked freely about his condition and was never ashamed of it. And it was only his frequent absence from classes due to constant crises that gave him away as a sickle cell sufferer, as his physical features indicated otherwise.
He was said to have told his parents once that he was glad he was the one with the condition in the family, as he wasn’t sure if his siblings would have been able to withstand the excruciating pain. But along the line, he gave up the fight, as he bluntly told his mother few hours before breathing: “Mama, I can no longer deal with the pain.”
At a valedictory service in his honour in Abuja recently, those who had had cause to interact with him painted glowing memories of their encounter. He meant different things to different people.
While to some, he was a hero, to others, he was a mentor. Some people said he was an adviser, and a role model to others. All these attributes came from his classmates and those older than him, and whom he had had contact with within three years.
Students of The Nigerian Army Officers’ Wives Association (NAOWA) College Abuja, where Jephthah was a student, narrated how he impacted their lives in the few years they were together.
Gold Hambolu, Chidera Okorie and Tamara-Kuru Agama are some Of Jephthah’s close associates and classmates, who spoke glowingly about him. To them, there can never be another of his type.
The parents of their hero, Emmanuel and Senami Ohiomokhare, both staff of the Africa Independent Television (AIT), announced a foundation in memory of their son at the valedictory service.
The Jephthah Ohiomokhare Foundation will provide support for children suffering from the sickle cell anaemia disease and channel a research into discovering whether, indeed, herbs can be of help in the treatment of the disease.
The foundation will also engage in an annual essay writing competition among teenagers with the focus on sickle cell anaemia. The official launch of the foundation will be done on Jeph’s birthday.
His father said the foundation is basically to begin a research and follow up on those who are into herbal medicine and see whether there can be possible cure for sickle cell, adding that Nigeria needs a cure for sickle cell.
The foundation will also explore the ability to write, as Jephthah loved writing. So, this will birth a start-up of a writing competition for teens aged 13 and 17. The idea, he said, is to encourage youth to freely discuss the topic in their day-to-day interactions.
The formal launch of the foundation is slated for June 28, when Jephthah would have been 16.He said: “The core of the foundation will be to reach out to parents, who are struggling with children living with sickle cell anaemia. We intend to investigate perceived cure with the help of partners, while also drawing government’s attention to such claims.
“Because we have come to understand that Nigerians do not like to read, particularly lengthy text, we hope to make available legible, simple and easy to digest write-ups that will encourage young people to begin to make sickle cell anaemia a point of conversation at a first or even second meeting.
“By this, I mean after the initial hellos and exchange of phone numbers, people should become so aware that they are comfortable by their third or fourth meeting to ask: “What’s your genotype?” Cures may be available, but isn’t it said that prevention is better than cure? No child should have to live with the pains of sickle cell anaemia, talk less of dying from it.”
However, his mother maintained that her son was not dead, but gone on a transition to another side, which is better than earth. She said she finds it difficult referring to him in the past tense.
“Whenever people tell me they are sorry for my loss, I find it difficult to comprehend,” she said. “You only lose what you don’t know where it is, but I know where my son is and so, I have not lost him. I know I will see him again in eternity, because I am sure he has gone to be with the One he loved so much. My son loved the Lord and served Him. That is the joy and comfort I have now. If he had not been a child of God, I would have been miserable.
“Because our son loved writing so much, we have a bias for writers and hope to get young children, particularly those who have lived with, or encountered sickle cell anaemia to write about the ups, downs, pains and the strength of our warriors, who are constantly in a battle to live. We hope when these write-ups are published; they will inspire people to do more.
“The Jephthah Ohiomokhare Sickle cell Foundation will certainly not be working in isolation. We are eager to work and partner with already known and well-established foundations to overcome this disease for our warriors.”
Dr. Olufunmilade Olugbemiga Oke, medical director, D&F Heritage Hospital, Abuja, told The Guardian that the only way to stop the scourge of sickle cell disease is for intending couple to know their genotype before marriage and carriers of sickle cell anaemia should not marry themselves under whatever guise.
Oke said since it has been established that the disease is a gene problem, which makes it a genetic disease and there is no cure for it except there is a miracle, young adults should be more responsible and be reasonable.
He said diagnosis can only be done through blood test and the crises experienced by sufferers are as a result of complications associated with the disease.
“What is obtainable is that the sickle cell prevents blood from circulating properly and sufferers begin to experience pain, when blood gets obstructed by the abnormal cell, such that blood cannot flow to some parts of the body,” he explained. “And it could be any part of the body, be it the lungs, brain, legs, arms, private part or anywhere. You can imagine if blood refuses to get to the heart, which is cardiac arrest.
“That is why transfusion is done, so that blood can flow well, but that too is done with caution. You don’t transfuse, when the blood level is normal, or else, the patient dies. If a sickle-cell patient is brought in, the best a medical practitioner, who is not a haematologist can do is just to help in reducing the pain and refer immediately to the appropriate doctor.”
For Jephthah, it is goodnight. However, it is the hope of his parents that sufferers like him in Nigeria and, indeed, Africa will get liberated from the excruciating pains of the disease.