SPEECH BY THE NATIONAL COORDINATOR OF ASSOCIATION OF PERSONS LIVING WITH SICKLE CELL DISORDER ON THE SPECIAL THANKSGIVING AND MEDICAL MISSION OF A WORTHY BENEFACTOR HIGH CHIEF ENGR JOHNBOSCO ONUNKWO ON 5TH NOVEMBER IN AWKA ANAMBRA STATE

Protocols:

Thanks to everyone for coming here today to celebrate with High Chief Engr Johnbosco Onunkwo on the occasion of his birthday. I feel greatly honoured to be invited to join in the celebration as a sickle cell survivor and advocate.

The celebrant is a man of substance whom had always conscientiously utilized his vast resources to uplift the needy from the cesspool of misery, gloom and hopelessness. He cuts the father figure to many dependents and indigent children, including vulnerable children living with sickle cell disorder, whom are standing here with me today to pay homage and honour him for his dedication and providence in times of want.

Indeed, our organization has come a long way with Akaekpuchionwa in the campaign against sickle cell disorder and providing economic and psychological support for vulnerable persons living with the condition. To ease our transport challenges at our Sickle Cell Orphanage and Underprivileged Home, Engr Onunkwo donated a vehicle used to convey the children-residents from place to place, which is often very difficult to bear due to our debilitating health conditions. He had one time donated office and household items to alleviate our pains and give us a sense of belonging.

I’m here today to tell the world about the myriads of challenges faced by vulnerable persons living with sickle cell disorder, with the hope that something unique and positive would be achieved. We continue to encounter the horrors of neglect, abandonment, deprivation, stigmatization, exploitation etc, in every turn and stage of our very existence.

This horrific scenario begins with our own immediate family members who subject us to different ridicules and denials because they see us as a burden and impediments to their own freedom and happiness. Are we then to be blamed for our health condition? Did we agreed to be born with sickle cell disorder? These are salient questions begging for answers inorder to challenge societal misconceptions about the condition. Managing the disorder requires not only medical intervention but also emotional and psychological support. This understanding led our organization to birth a specialized facility, called the Sickle Cell Orphanage and Underprivileged Home.

The establishment of the first sickle cell orphanage home in Nigeria is a significant achievement in the fight against sickle cell disorder. This dedicated facility provides care and support for children with SCD who are orphaned and abandoned in a safe and nurturing environment. We make sure that SCD children under our care have access to essential healthcare services, including regular check-ups, medication, and counseling. Furthermore we provide them with adequate educational opportunities so they can compete favourably in a changing world.

This comprehensive approach to care has resulted in improved health outcomes and a significant reduction in hospitalization for residents. Unlike before in 2020, when we lost quite a good number of our members due to starvation and deprivation occasioned by the COVID-19 lockdown. But today we are changing the narratives and improving the quality of lives of SCD children. It has not gone well without presenting us with it’s own brand of challenges and confrontations, which I hopefully appeal for all your supports inorder to surmount.

A more spacious facility is needed to further drive our aims and objectives to create a desirable sickle cell community where residents can share experience, exchange knowledge, and find solace in knowing they are not alone. Our present abode which is temporal can no longer contain the daily pressures of a growing and burgeoning community. We need a permanent site to establish a larger sickle cell hub and resource center, with facilities to include a staffed clinic, residential hall, study center, access to clean water supply etc. We need another vehicle for transportation since the frequent breakdown of our present vehicle is draining us both physically and financially.

We want to use this opportunity to tell you whom are close to the presidency to appeal to President Bola Ahmed Tinubu, on our behalf. The current president of Nigeria is very keen on sickle cell matters and had been a great patron and sponsor to the Lagos based Sickle Cell Foundation. Now that he is president and father of the nation, we only pray and hope that he will extend such magnanimity to us here in Anambra State.

On the same hand, we are earnestly urging the federal ministers here present to also come to our aid. Please don’t allow us to suffer unjustly for a condition that is not of our own making. We are ever willing and ready to contribute our own quota to the socioeconomic stability of this great nation when the right opportunities and atmosphere are afforded us without stress.

I thank the celebrant once again for this wonderful opportunity and honour and wish him more fruitful years in the service of humanity. May the almighty God grant you all journey mercies back to your various destinations.

Aisha Edwards Maduagwu,
National Coordinator,
APLSCD and
Director,
Sickle Cell Orphanage and Underprivileged Home Agulu.
08033222007.