Monday, 21 December 2015

APLSCD Rebuff Media Reports of Protest in Solidarity with Sen Uche Ekwunife, Calls for Retraction

Aisha


By Nwoyemezie Osineme

Today is not meant for long speeches, but for definite actions, nay, definite positive actions. From the torrent of articles bombarding the media, online, electronic and print, in the recent times, courtesy of yours truly, nobody would argue that not a few words have been spent on the true situation, albeit, true deplorable state of sickle cell disorder and sickle cell patients in Nigeria, and how several NGOs  and individuals have continued to 'mine our sickle blood for money'.
What is happening today is what I would call the first crest of climaxes of an intercourse that was initiated by the outcome of the just concluded World Sickle Cell Day. It became glaring to me ,in particular, from the dramatics I watched on television where healthy folks were practically begging for money in the name of sickle cell disorder and patients, that we sickle cell patients have become an abject object of victimization and stigmatization of the most deplorable order. I saw that our situation has become such that, given that most of us would rather not go public about our situation, fraudsters have been having a field day, taking advantage of the goodwill of the government and other well-meaning individuals and corporate bodies, locally and internationally, and amassing mega wealth for themselves. while we sickle cell patients continue to battle with discrimination from our parents and society, constant psychological and somato-physiological pains and anguish, stigmatization, drug addiction and poor management practice. More carrier marriages are still being condoned with the resultant continued increase in the number of sickle cell babies being added to the stock.
So, what about the billions of naira being pumped into Sickle Cell Foundation Nigeria by MTN Nigeria, i asked myself, given that every one minute from every call made on the network is donated to that singular foundation? How about the multiple millions the federal government and other individuals and corporate bodies donated just on that singular World Sickle Cell Day, to Sickle Cell Foundation, Nigeria? How come no impact has been recorded from their activities, at least by those of us in the South East here?
Yet they keep presenting us as sub-humans who can't help themselves and keep collecting money on our behalf, thereby perpetuating that erroneous image the society has of us - as push-overs, ne'er do wells, slimy slum-deserving lot, Sniggles!
> More and more findings of mine kept validating these hypotheses and this got me so psychologically wiped that I broke down into a severe health crisis. While on my sick bed, I resolved that I will not remain a victim but that I will take the battle to the enemies' doorstep; challenge the status quo and restore the dignity of this class of humans and put a definite stop to this wickedness called Carrier Marriages that produce such unfortunate sickle cell babies.
      
The Association though Six months old in Nigerian based in ANAMBRA State has achieved a whole lot, ranging from 21job slot, 10 skill Acquisition, off setting medical bills 7 severe crisis complications, 80 school fees paid,35 undergraduate bursaries given, 20 traders and artisans workers supported, and 5 farmers stipend paid. Courtesy of the good spirited Ndi ANAMBRA especially Gov. Obiano, His wife Osodieme and the Catholic and Anglican Bishops.
No doubt most Sicklers are known to be very exceptional intellectually sound. Everyone who has made contact with them will attest to this. Nature never cheats anyone for what we lack in physical strength, we make up for in mental prowess. So, why should we continue to be seen as second class citizens? Why should we continue to be made to feel ashamed of our status? Why should we not be given the right enabling environment to maximize our potentials? Why should we not be given the preferential treatment special members of the society are entitled to?
A lot of sicklers, due to neglect of the society and the harsh conditions of the society are dying daily. At this point, I would like us to observe a moment of silence for some of our registered members in ANAMBRA who could not make it to this year end, young vibrant sickle cell patients who started this preparation with us but gave up the ghost early this month as a result of harsh weather conditions...
So, to cut the long story short, we decided that no one would speak on our behalf anymore for we have the vocal strength to do that for ourselves. We are not some push-overs as you can find countless number of us as professionals in all fields of mental endeavour; banking, medicine, law, education, business, just name it. This birthed the Association of People Living with Sickle Cell Disorder.
We have initiated a campaign to keep drumming it into the consciousness of all and sundry that 'Carrier Marriage' is a mortal sin and the worst evil against humanity. Most parents who, out of so called blind love, obstinately copulate to produce sickle cell babies, still turn around to become the ones that victimize them the more!
We have started a campaign to say to all those NGOs still bearing the nomenclature - Sickle Cell, yet being run by healthy folks, we want you no more! It is he that wears the shoe that knows where it pinches him. Ooo!
We can't thank the media enough for they have been, and will still remain, our only strength; ABS and other electronic media, news48hrs.com, gistpost and other online bloggers, The Sun newspaper and other print media. I'll like to specially thank Mr Uche Nworah of ABS for giving us the platform to be heard thereby saving a lot of lives today.,
I will also like to specially thank the wife of the Executive Governor of Anambra State, Chief Mrs Ebelechukwu Obiano, Osodieme, for her consistent overwhelming support especially this Christmas party which took many of us by surprise and for pledging to empower all sickle cell patients in the state and making good the pledge so far by assimilating 10 sickle cell patients in the ongoing skill acquisition programme in the state, and will be empowering them this coming Wednesday 23 DEC. Also, my immeasurable gratitude goes to Chief Nwobu-Alor, for sticking out his financial neck for the Association when it was still in its nascent stage and showing practical compassion to it ever since. May I also appreciate Erstwhile Gov.Peter Obi who has been very concerned, understanding, as well as helpful to this association since its inception. I'd also like to express my sincere gratitude to the bishop of Awka Diocese, Most Rev. Dr Paulinus Ezeokafor, a man that has earned my respect both for his person and the Catholic church. He made this Christmas a memorable one for all the members of the APLSCD by feeding and giving  us bags of Rice for this Yuletide which we shared to the sickle cell patients here, possible. Also, His Grace, Most Revd Christian Efobi, I must commend. His support went beyond the perfunctory and wish to host us in our grand finale thanksgiving on 27Dec.at St. John Anglican Church EKWULOBIA, May God bless you'.
The NDLEA ANAMBRA state has been carrying us along in his awareness campaign concerning drug abuse and he is really appreciated. The Chairman of ANAMBRA State Local Government Service commission, Dr. Peter Egenti and commissioner for Local Govt. Hon Greg Obi, Senior Special Adviser to the Governor on security matters Mr Oscar,  Executive Director SEMA Chief Paul Odenigbo, Mr Oderaigbo are most appreciated for their personal support I maintain that what we need is not pity by empowerment.
Our drug addicts and in fact all of us still urgently need good and accessible counselling centres; we still need more first aid kits and are still agitating for government sponsored NHIS cards; Patronage to the government through Sickle Cell clinic in all the Government General Hospitals, and  we are still agitating against the existence of fake NGOs existing in the name of Sickle cell disorder; we are still vehemently agitating against 'Carrier Marriages'. It should be banned, once and for all in this country so that the church can actually face their humanitarian responsibility. This, I believe, is the only way we can break the jinx of the scourge of Sickle Cell Disorder in our society.
Special Tribute to Rev. FR.Dr  Dr Comas Ebebe whose divine posting to Port Harcourt came to us as a rude shock, but we believe that God knows the best and will see him through and take care of him just like he took good care of us, we will miss you greatly especially your official Air condition Bus which you always avail us for our sensitization and Thanksgiving services and Masses.
Pharmaceutical Society of Nigeria, Actors Guild of Nigeria, Religious bodies, legislator, corporate bodies, the government, well meaning Nigerians, you are all welcome on board this campaign.
Thank you once again for making out time to be here with us today being our End of our year Celebrations of 2015 Yuletide. Please make the most of this moment because you will never have it again.

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