UNITED NATIONS WORLD SICKLE CELL DAY CELEBRATION 19th June 2025

Distinguished guests, esteemed colleagues, fellow Nigerians, and honored guests,

I stand before you today as Aisha Edward Maduagwu, National Coordinator of the Association of People Living with Sickle Cell Disorder and Director of Sickle Cell Orphanage and Underprivileged Home Agulu. It is my great pleasure to address you on this momentous occasion of World Sickle Cell Day.

As we commemorate this day, we reflect on the journey we have traversed and the milestones achieved. Our Association has made significant strides in advocating for the rights and welfare of individuals living with sickle cell disorder. One of our most notable achievements is sponsoring the successful passage and assent of the Anambra State Sickle Cell Law. This landmark legislation marks a significant milestone in our fight against sickle cell disorder and demonstrates our commitment to creating a supportive environment for those affected.

Another achievement we take pride in is establishing the first Sickle Cell Orphanage home in Nigeria. This haven provides a safe and nurturing environment for orphaned and underprivileged children living with sickle cell disorder. For over five years, we have cared for these children, providing them with shelter, quality education, good health management, and nutritional values that have significantly improved their health and wellbeing.

Our dedication to their general wellbeing extends beyond medical care. We strive to create a supportive ecosystem that empowers these children to thrive and reach their full potential. We are proud of the progress we have made and the lives we have touched.

Today’s occasion holds great significance as we strive to raise awareness on the importance of genotype education and sensitization. We urge prospective couples to take their genotype status seriously and ensure compatibility before marriage. This simple step can prevent the birth of children with sickle cell disorder, sparing their families the challenges that come with this condition.

We also call on government and church establishments to uphold their responsibility in checking incompatible genotype status without compromise. Those entrusted with this critical role must prioritize the wellbeing of future generations, ensuring that genotype compatibility is given the attention it deserves.

On this special day, I would like to extend our heartfelt appreciation to the Anambra State Government, led by Governor Charles Soludo and his wife, Dr. Mrs. Nonye Soludo, for their unwavering support towards the welfare of our orphanage. Their commitment to the wellbeing of our children is truly commendable. We also appreciate the efforts of our Commissioners, Dr. Afam Obidike and Tony-Collins Nwabunwanne, for their support and dedication to our cause.

We wish to express our gratitude to His Excellency, Peter Obi, for his support towards the sustenance of our home. His commitment to the welfare of the vulnerable is truly inspiring. We commend Prof. Stella Okunna for her tireless efforts and dedication to our cause. Her contributions have been invaluable, and we are grateful for her support.

We wish to express our profound gratitude to His Excellency, Sir Paul Chukwuma, for his constant support to the welfare of our home. His generosity knows no bounds, and we are particularly grateful for the massive gift of a fully equipped ambulance donated to our home. This gesture will undoubtedly enhance our emergency response capabilities and ensure timely medical care for our children. We also thank his amiable wife, Mrs. Fidelia Chukwuma, for her unconditional motherly love and care.

We are grateful to these illustrious sons and daughters of Agulu, whom have been of tremendous support to us. We appreciate Dr. Eric Okoye, CEO of Juhel Gas and Pharmaceutical, for his kindness and generosity. We thank Chief Emma Ibeneme, CEO of Chibe Bakeries, for his contributions to our cause. Mrs Elizabeth Adimorah for her support and encouragement. Additionally, we appreciate Mr and Mrs Nosike Obiefuna for their constant water supply, Mr Kenny Anolue for the scholarship given to some of my children and provisions to the home. Other eminent personalities from Agulu who had assisted us in various ways are duly recognized. Due to want of time and space, we can’t mention all but know that your supports has been instrumental in our journey, and we are truly grateful.

Special thanks to Chief Innocent Nwosu, CEO of Lovebite Bakeries, for providing nourishment to our children through the supply of Lovebite bread. Your kindness has been a source of comfort to us, and we are grateful for your support.

We appreciate the efforts of organizations that have supported us, including ASA Worldwide, The Nigerian Police, The DSS, NDLEA, Bond Pharmaceuticals, Friends for Friends and Mr Chidiebere Ezenwuba and Johnbosco Onunkwo Foundation Your contributions have made a significant impact in our work, and we are grateful for your commitment to our cause.

We thank our Lordships in the Catholic Diocese of Awka and Ekwulobia. The Anglican Diocese of Aguata and Onitsha metropolitan Diocese. Also respectively, our Chaplains in these dioceses for their wonderful works and dedication.

Special mention must be made of the Mayor of Anaocha Local Government Area, Comrade Rome Ibekwe, for the monthly stipend provided to our orphanage home. His empowerment program, which benefited some of our inmates, has been a source of hope and inspiration for them. We are grateful for his kindness and commitment to the welfare of our children.

We extend our deepest gratitude to the entire Agulu Community, led by the President General and the Regent of Agulu, for their unwavering support and kindness towards our orphanage home. We also appreciate the Chairman of Amatutu Village, Agulu, for his leadership and contributions to our cause. Your supports has brought us some deserving recognition. Also, we appreciate the efforts of the serving corp members in Agulu and Anaocha LGA, your dedication to nation building is highly commendable.

We are faced with some challenges that continue to hinder our mission and resolve to achieve a zero record of sickle cell disorder in Anambra State, and the south eastern geopolitical zone.

Foremost, is the unwillingness and lack of cooperation from the house member representing Anaocha 1 constituency, and chairman house committee on women and children affairs, to effectively utilize her oversight functions which is primarily for the welfare of women and children. Vulnerable children continue to suffer unjust treatments without any mechanisms that would give them respite. The house member representing Anaocha 1 constituency, having jurisdiction over the sickle cell orphanage and underprivileged home here in Agulu, remains far away and inaccessible. Nothing moves her to action, and we could only pray for another opportunity to chose those who would have the interest of vulnerable persons particularly children at their very core.

We are in need of a permanent home that would provide more spaces and living accommodations for our growing dependants. Our current rentage is becoming too exorbitant and choking, thereby inhibiting our full potential to continue with our mission towards vulnerable sickle cell persons.

We call on the Anambra State government, to speedily and fully implement the Anambra State Sickle Cell Disease (Control and Eradication) Law, 2019. This policy would give vent to the campaign against sickle cell disorder, and make our dear state to become a shining example and model.

Government and it’s enforcing agencies should not hesitate to clamp down on persons or groups of persons claiming to cure sickle cell which they knew to be false, thereby exploiting their unsuspecting victims and worsening their health conditions through administering them with concoctions and fake miracle believes.

As we celebrate World Sickle Cell Day, we urge continued support and collaboration to further our mission. Together, we can make a difference in the lives of those affected by sickle cell disorder and work towards a future where no record of children are born with this condition.

Thank you immensely for your presence, time and attention, and may God lead us all safely back to our various destinations.

Aisha Edwards Maduagwu,
National Coordinator,
APLSCD and
Director,
Sickle Cell Orphanage and Underprivileged Home Agulu.