The Sun News On-line|Abuja Reports

Ogiri family is a typical example of a family devastated by a disease which hitherto has defied cure. With about 48 children, only two children are alive.

The disease which has been variously called abiku, ogbanje or sickle cell claims over 80 per cent of 540,000 children that are born with it in Nigeria. Even with the advancement in technology and as nerve-racking as this statistics may be, medical scientists have not found solution to this pandemic.

Sufferers go through excruciating pains (crisis) daily, waiting patiently for the day they will go to the grave. Having suffered alone without help coming their way, they have congregated into a body called Sickle Family to console themselves.
“I am Phil Ogiri. I am the matron of Sickle Family in Abuja. I am over 50. One of about 48 children of my father and I and my brother are the only two surviving children.

“God has saved me because my own mother gave birth to over six children. My elder brother is AS, so he is a carrier and myself is SS. All the other children, they say it is witchcraft, it is abiku or ogbanje that killed them. We lose a lot of sickle cell people that way. I don’t know how lucky I am and how God wanted to preserve me. I know a promient Nigerian whose 23-year-old child died in crisis while waiting to see a doctor. I am a woman and I have childbirth. Childbirth is nothing compared to crisis.

“Sickle cell affects a larger population of Nigerians. There are more children born with sickle cell diseases than there are with HIV, AIDS, polio and all the other diseases combined. Over 80 per cent of sickle cell children die before the age of 5,” she said with a voice full of emotions.

However, Phil is not alone in appealing to the government to come to the aid of the patients by way of subsidizing the cost of crisis management. Miss Uloma Ukoha is a sickle cell disease counselor, a co-ordinator, Sickle Family, Abuja and a patient. “From Sickle Family field study, we went to hospitals and found out that 30 per cent of people who come for ante- natal are AS married to AS. And that is how sickle cell children are born. So, we did the mathematics. If a woman has four children, the percentage of having a child with sickle cell disease is 34 per cent with each pregnancy. We now did the mathematics and found out that we have approximately 540,000 children born with sickle cell disease every year. And it is frightening.

“It is alarming. While I was doing this, I said, Father God, where are we going to start?. What are we going to do? What about those in the villages? Many of them die at childhood and the next thing they say is malaria. How do we know that it is not malaria that triggers crisis that kill them.

I appeal to every Nigerian, even if you don’t live with sickle cell, you mayknow someone living with sickle cell. You may have seen one or heard of one. It is help that we need. We do not need you to come and research on why we have those complications. Our situation can be better if we begin early to manage it. We have a better life. We have a better prognosis and a better outcome.”