It was a joyful day recently for sickle cell patients in Anambra State. Last Saturday, the Association of People Living With Sickle Cell Disorder (APLSCD) in the state paid the school fees of 40 of their members in primary and secondary schools for the 2014/2015 academic session.
APLSCD equally gave out bursary allowances to ten undergraduate students of the association, even as it promised to do more in the nearest future.
Coordinator of the association, Aisha Edward, who disbursed the cash to the registered members, said it was part of her effort to champion the cause of sickle cell disorder patients in the country in her lifetime.
Her words: “This is an ecstatic moment for me right now. I am so delighted to see this day. My heart is full of joy today. I believe that if I should die now, my heart will be led to rest. This is the first time that an NGO is embarking on a scholarship scheme for sickle cell patients in Nigeria. My dream to cater for the welfare of my people relegated to the background by fake NGOs, government, society and some family members has been fulfilled. I found this association to reach out to patients of sickle cell disorder in Nigeria at their various point of needs.
“We do the job out of our love and passion to save souls. I dispensed the cash to enable the dropouts to return to school. Some of these ones have been withdrawn from school voluntarily and involuntarily sequel to financial crisis.
“Apart from this cash, Our association, which is only three months old, had secured 21 jobs for members in Anambra State, trained 10 people on skills acquisition through the Anambra State First Lady’s CAFÉ, and we are not relenting till we wipe out the inhumane genotype from the face of the earth through our intense sensitization and awareness programmes. We are also putting a long lasting smile on the faces of my colleagues who are the sufferers.”
Edward further enjoined the government at all levels, lawmakers, public and private institutions, as well as traditional and religious institutions to key into their sermon of ‘no marital vow’ to intending couples whose genotypes were incompatible, with a view to ending the proliferation of the sickle cell anaemia gene.
She also reiterated the need for legislations to be made, enacted and enforced and for relevant stakeholders in the society to assist sufferers of the disorder through the association via training, empowerment and scholarship. In her words, such would encourage them to impact their society positively.
Edward, however, regretted that Anambra State Ministry of Women Affairs and Social Development had constantly turned a deaf ear to the gathering of sickle cell patients, wondering how the ministry would easily discover the needs of the patients. She lamented that the ministry officials had failed to honour the organisation’s “series of letters for both appeal for support and invitations to our programmes, thanksgiving and stakeholders’ meetings.”
Her words: “I invited the Anambra State Ministry of Women Affairs and Social Development, and the Ministry of Health. But none turned up, even though they promised to be in attendance. It is highly regrettable because we, the sicklers, are their children. When I went to the ministry to invite them, one of the top officials there claimed to have adopted two sicklers and that she suffers to donate blood to them always. I pitied the woman, thinking that her supposed experience would make her shower us with love and care. But the reverse is the case.
“She hadsnever attended our meetings, church services and events. I wonder if it is when I die, or when we lose our husbands that they will come to our aid. This is because each time you visit the ministry you will keep hearing of how many widows they responded to their clarion calls. Maybe because most us are not married while some married ones have no late husbands, maybe that is why they chose not to associate with us at all.
“On the other hand, the Ministry of Health is our father ministry but they always shun our activities. Even when the commissioner is unavoidably absent because of his tight schedules, the department responsible for our management are nowhere to be found, despite my efforts to invitie them to come and witness what is happening to the patients under their care. We do not know our offence. We are pleading with them to consider us. We need them to stop the scourge of proliferation of sickle cell, the psychological traumas and stigmatisation we are passing through in life.
“I have strongly observed that some of them chose to sit down to read some cosmetic news, especially the scandals associated with their careless conduct. Then I will be forced to start protecting their images at the detriment of my members’ wellbeing and desires. I will like to say that I am not a good liar and will not continue to scream that all is well even when it is very obvious that my people die frequently for lack of care and absolute neglect.
“I so much despise eye service because it is very sinful to God and man. The media is a very important part of our sensitization programme; therefore I cannot continue to disagree with them always. Neither will I continue to be an image maker for any erring functionary with the government at the expense of my people’s survival.”
Speaking in separate interviews, two beneficiaries – Chidozie Nwankwo of SSS1, Community Secondary School, Ufuma, and Chika Nwafor, JSS1 student of Comprehensive Secondary School, Enugu-Nanka commended the association for paying their school fees, which they claimed had been a great burden to them, and vowed to compliment the effort by facing their study squarely.
But another set of sickle cell patients, who spoke under the condition of anonymity, regretted ever choosing the skills acquisition programme in place of schooling.
The protesting students, who lamented that they chose to learn some skills to be self-sufficient and become employers of labour, disclosed that since they passed out of the training, they had not been empowered.
“They promised to empower us with take-off grants or resources, but it has not been done for over two months that we passed out of the training. I regret it. If I had known I would have chosen the educational packages and receive my school fees. I initially resisted it because government promised us money while APLSCD pledged to cater for our school fees. I thought that the promise made by our coordinator was unrealistic But to my shock, it is the government’s promise that is unrealistic,” one of the protesting students said.
Last Sunday, at the Cathedral of St. Faith, Anglican Communion Awka, the Association of People Living With Sickle Cell Disorder (APLSCD) had a thanksgiving service to thank God for his mercy and loving kindness upon the members.
APLSCD, which had earlier performed a similar function at St. Patrick Catholic Cathedral, Awka, also sensitised the public and church to the danger of marrying-off couples without the necessary genotype checks.
“Sickle cell is not a disease but a deformity of the red blood cells. Parents and religious leaders should stand against the act of the proliferation of SS children in totality. You don’t wed couples in the name of blind love. Also, the public, especially the philanthropic individuals, should shun fake NGOs parading themselves as our agents because they represent their personal pockets. Channel your help to us. We shall use them judiciously to address our various challenges. We have about 375 members whose tuition fees and bursary are yet to be paid. We also have those in need of first aid boxes,” Aisha said at the thanksgiving service.
She thanked Bishop Alexander Ibezim for his support, the Anglican communion for always looking out for their own even when it mattered most, and Venerable Silas Ike for the special time he gave them to speak to the congregation. She asked God to reward them and touch the hearts of the authorities.
Also speaking at the church service, Revd Augustine Okoji, Senior Curia at St. Faith Cathedral, Anglican Communion appealed to parents to be at the forefront of ending the scourge of sickle cell anaemia, while urging the sufferers to strive for success not minding whatever challenges that they might be facing.