Love her or loathe her, Aisha Edwards-Maduagwu has written her name in the annals of SCD awareness in Nigeria. In 2015, Sickle Cell News dubbed her a ‘General’ in the SCD trenches in Africa’s largest – and the world’s highest-burdened SCD country. In this interview with Prince Emetanajo, she tells more about championing SCD cause in the midst of her own SCD journey …
This is about the first known orphanage for people living with SCD in Nigeria- how do you feel being a front-runner in this field?
I feel honoured and fulfilled knowing that a free shelter for the most indigent and orphaned sickle cell warriors has been settled in this trying times of our economic and political history as a nation. The economic challenges brought about by the COVID-19 pandemic is worst felt among sickle cell warriors. Many people are now waking up to the realization of the ugly circumstances surrounding persons living with SCD.
I have dedicated a good part of my adulthood to drawing attention to their sad conditions. That is what APLSCD stands for, the support and welfares of persons living with sickle cell disease. I have pursued this goal to the legislature to see if laws can be enacted to suit this purpose. The Anambra State Government has been quite responsive with the passage and accent of the Sickle Cell Disease (Control and Eradication) Law, 2019. It is a thing of joy that APLSCD can set up this home. Cases of abandonment and neglect that have hitherto frustrated me is now a thing of the past. We can now conveniently absorb such warriors in the home and take proper care of them. It is a noble achievement and I feel very elated.
Is the orphanage open to any child with SCD from any part of Nigeria or is it restricted to APLSCD members and warriors within your locality/state?
Our home is for every sickle cell warrior in Nigeria needing assistance and support. SCD warriors from other States aside Anambra are to obtain recommendation from a hematologist, preferably from a Teaching Hospital before they can be admitted into the home. This is important because we need to check their medical history and be prepared for any eventuality. Also a written statement from their religious or town head may suffice. This is because every child in the home is expected to have a dossier on record for possible security inspections, in line with the world best practices in Child management in Orphanages.
For those in Anambra State, you have to be a registered member of the Association of People Living with Sickle Cell Disorder and recommended by your zonal coordinator.
What qualifies a child to be admitted there?
Lack and deprivation or any such cases of abuse and neglect. We also have a legal arm that are ever ready to seek justice in the court if we notice that their rights has been violated. We have a cordial relationship with the police and other law enforcement agencies, so offenders won’t get away that easily. In the areas of financial and economic challenges leading to frustrations and depressions of these warriors, they are good candidates for absorption into our home. Still the procedures that I have enumerated before have to be adhered to.
What are the facilities to be enjoyed by inmates?
We assure them a roof over their heads in a comfortable and peaceful ambience; they are well fed with great nutritional value, with recreational and other entertainment gadgets. Domestic staffs are employed round the clock to cater to their laundry and other domestic chores. Medical facilities are right behind the home with qualified nurses and doctors to attend to them. There is also Cllr. Ernest Ezeajughi Counselling Department for those in a depressing state or those dependent on opioids. We enrol them in schools and also make provisions for home lessons.
How do you fund the Orphanage?
Ours is a team of visionaries and committed advocates against sickle cell anaemia. Our honesty and determination has endeared us to some well-meaning groups and individuals who have keyed into our vision. We receive supports from the churches, especially the Awka Catholic Diocese; Metropolitan Anglican Diocese on the Niger, Aguata Anglican Diocese, Methodist Diocese Onitsha to mention but a few. Among our prominent benefactors are the Senator representing Anambra South District, Dr Patrick Ifeanyi Ubah – he was the one who donated a brand new vehicle to the association sometime in 2018. Others are Wife of the Anambra State Governor, Her Excellency, Chief Mrs Ebelelechukwu Obiano.
Sen. Victor Umeh is a regular donor to APLSCD and even gives scholarship to our undergraduates; The Agulu community where the sickle cell home is located has been supportive to our cause too. The Traditional ruler of Agulu, Igwe Innocent Obodoakor and his president general Chief Andy Orakwelu are fine gentlemen, and great leaders.
Being married to an Agulu man has its own advantages too. The first Female Professor of Mass Communications in Nigeria, Prof. Chinyere Stella Okunna is a visible mother to APLSCD at all times with her words of counsel and supports with food stuffs and empowerment machines. Prof. Benard Odo former SSG to Ebonyi State Government and CSP James Nwafor (Rtd) who are my own brothers before I got married have been constantly supportive all season. Some notable organizations not mentioned here have also been supportive.
We are yet to receive a cent from any foreign donor agencies, but we are patient and expectant, maybe God is preparing something magnanimous from that corner.
The land on which the orphanage is built, was it purchased or donated? If donated, by who?
Rented. It was an old branch office of UBA Plc in Agulu before they moved into their new edifice. Long abandoned, it cost us quite a sum to make the place befitting. A particular old schoolmate of mine from our days in HRC Enugu was highly instrumental in the renovation of the building. With help from other from well meaning Nigerians, I was able to furnish it to a satisfactory condition.
All sickle cell warriors that are well to do should find a way to reach out to indigent persons living with this scourge. I am aware that two current governors are living with sickle cell. We have professors, doctors, captains of industries who are living with sickle cell and God has so much blessed these people. They have the wherewithal to help and show support to the people who share the same fate and agony with them. There are some highly placed individuals who receive money from foreign donors on behalf of persons living with sickle cell disease, but little or nothing is being done. These people have sold their conscience – they continue to make money from the misfortunes of the SCD constituency.
I want to task other Senators and Representatives in the National Assembly to support such life-saving bills for the benefit of persons living with sickle cell disease across NigeriaAPLSCD National Coordinator Aisha Edwards-Maduagwu
I have tried my best irrespective of my own sickle cell condition and would challenge others to do the same. This is just the first step of our determination to improve the living standards of warriors despised and neglected by society. The exquisite home is still a temporal settlement, as we have plans to move into a permanent site built in our name soonest. We are aware of the efforts of Distinguished Senator Dr. Patrick Ifeanyi Ubah, in sponsoring a bill in the National Assembly for the establishment of the National Center for Sickle Cell Anaemia Research and Treatment In Aguata, which we learnt has already passed its first reading.
I want to task other Senators and Representatives in the National Assembly to support such life-saving bills for the benefit of persons living with sickle cell disease across Nigeria. We need the support of State Governments as well to enact laws promoting the economic support of sickle cell warriors. This is not a task for an individual or group of individuals to shoulder alone. All hands must be on deck to bring about rapid transformation to the least of impoverished warriors. Some of them are afflicted with leg ulcers which is a prominent and sad feature of the sickle cell condition. They need medical aids and most importantly mobility in order to live normal lives. I call on the fourth estate of the realm to give enough publicity to the challenges of SCD in our African society. Together we will win the war against this disease.
Sickle Cell Home and Center Agulu, Anaocha LGA, Anambra State.
TO SUPPORT APLSCD in its humanitarian work in Nigeria: Account Details:
Account Name: Association of People Living with Sickle Cell Disorder
Bank Name: FCMB Plc Account Number: 3373524019
APLSCD’s National Coordinator: Mrs. Aisha Edward-Maduagwu, can be contacted on 07014152622 and 08033222007