In the light of the ongoing intensive campaign launched by the Association of People Living with Sickle cell disorder, Mrs Apollonia Nkechi Chukwuma, The president of CWO Awka Diocese, who it was discovered has had a burden for Sickle Cell patients and the disorder was engaged in an interview by Aisha Edward, the coordinator of the Association and she shared her experiences and why NGOs should be discouraged. Following are excerpts.
Despite the fact that we live in the information age, babies with Sickle Cell Anemia still abound. How do you react to this and what is the church doing as regards this among the womenfolk?
It is disheartening to note that Sickle Cell Anemia still abound. It is unfortunate. Despite the fact that there are jingles here and there over the media – electronic and print, to disseminate information to would be couples. Unfortunately, some women are desperate to get married as if someone fails to get married, she has committed a heinous crime. It is not it. As a result of this impression, they fail to heed to heed clarion call. Every woman or man ripe for for marriage should go for genotype test. Some who go for genotype test would hide the information they have received. They would not present the medical paper to the man who is willing to marry them. They would tell. The hospitals are not helping matters. Some clinics, some quacks give the wrong information to these potential husbands. If a woman is tested AS, the nurse would write AA so that the man would be deceived that even if he is AS he could still marry the lady. It is unfortunate and if the man is AS and the woman is AS, they may beget SS children.
Let me talk about what the church is doing. Because of the agony of these children. I know some of them who are my students. They miss classes as a result of the crisis they experience. Their education will be half-baked and they will be frustrated because their mates are in school and they are not. They are unhappy they are living on drugs. If you come closer to them, you will have pity on them. The catholic church now insists that before any intended couple will be wedded, they must present their certificate of fitness and if they are both AS, they will not be married. That is why some of them forge their results aided and abetted by the nurses. I know a couple who had no reason to be victims of sickle cell children. They were in the medical field but the man deceived the woman and told the woman he was AA. They had the first child and everyday in the hospital so they decided to go for a test and it was discovered they were both AS. Today they have five children, all SS. These children live on drugs, they are frustrated and they hate their parents. Due to such deceit, the catholic church now insists that the intending couple should go for the test in catholic hospitals where such lies would not be told. The two must attend the test the same day and if both of them are AS, they would be told the truth that they will not be able to marry and should look for another. It is better the marriage is stopped there and then rather than allowing them to get married and they beget children they will punish because the two of them will not be involved in the punishment. Only the children will continue to live on drugs year round. I wish others will emulate the catholic church.
We appreciate the giant step the Catholic Church is taking. How do you advice the crusade be taken to the camp of the sickle children, who are suffering for no cause of their own who graduate without jobs and others who needs assistance?
I started the crusade myself. I got into it without anybody dragging me into it. It was a personal apostolate for me long ago in the 90s. I started this clarion call among the women. During August meeting, I would shout in the hearing of the women. Parents should step out to drum it into the ears of their children that they must go for genotype test and every other necessary test before following up on any marital process. I am advocating that government should step in to help those living with it, especially those that have graduated they should be integrated into the society, they should be given a sense of belonging. We shouldn’t give them the impression that they would soon die. Let government employs them. Give them their concession. They should be given preferences. They should be employed first. Then those whose parents cannot afford their education, the government should step in to train them.
Are you also of the opinion that government should provide them concession with regards to the NHIS scheme?
Yes, the government is in a better position to help. I know of some families that have up to 3 sickle cell patients as children. Some, all the children are sicklers. These children are suffering for something that is not of their own making.
Madam, what is your CWO group doing in future partnership with these people living with sickle cell disorder, givent that there is a law passed in Anambra state since 2002 mandating every student at any level to provide a certificate of screening showing their genotype status. What CWO group going to do in partnering with the group to see the sensitization is intensified.
That is why I told you that we have started up as apostolate. We started talking about it in CWO since 1993; warning that before they marry off their daughter they should check the genotype of the intended suitor and ensure it is compatible with their child’s. so we are doing our bit of it. If some of them come, if we cannot employ them, we can make a case for them.
There is this man who has been floating a foundation named sickle cell foundation and has used the foundation to extort money from the international community and Nigeria, and not affecting the lives of people living with sickle cell disorder.
Government should know what NGOs are doing. Many NGOs live on the challenges of others. People will say they are fighting the cause of those living with HIV, for instance, and when they get money from the government or other bodies or private individuals. It goes to their individual pockets. Otherwise, God will visit such humans and give them a taste of it. So, it is the responsibility of government to give certificate of operation.
Any final words for the wife of the governor.
I really appreciate her. Osodieme is doing a lot in the area of missing links, helping amputees and other indigent ones in the society and I encourage her to continue in her good works. I also encourage all Anambrarian to continue to give her their unreserved support especially in this noble cause of making Anambra number one in the care of Sickle Cell patients and reducing the scourge of Sickle cell disorder.
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