The Association of People Living with Sickle Cell Disorder (APLSCD) and the Sickle Cell Orphanage and Underprivileged Home, Agulu, have announced the death of Chilota Ezikwelu, a sickle cell orphan from Ifitedunu, Dunukofia Local Government Area, describing her passing as preventable and emblematic of deep failures within Anambra State’s social welfare architecture.
In a statement signed by Aisha Edwards Maduagwu, National Coordinator of APLSCD and Director of the Agulu-based home, the association said Chilota’s death was not caused by sickle cell disorder alone, but by “abandonment, rejection and systemic neglect by those entrusted with the care of the vulnerable.”
Chilota spent five years at the orphanage after being brought in by a family acquaintance. At arrival, she showed signs of severe malnutrition and poor health. With sustained medical care, proper nutrition and a stable environment, her condition improved markedly. She was enrolled in school, thrived academically and later passed her WAEC examinations, a feat the association said underscored what adequate support can achieve for children living with sickle cell disorder.
Beyond academics, Chilota was described as sociable and caring, often assuming a protective, elder-sister role among younger children at the home. During repeated sickle cell crises, the association said it bore all medical expenses, running into hundreds of thousands of naira, while her extended family neither visited nor contributed financially throughout her stay.
The association expressed outrage that some of Chilota’s relatives had held, and continue to hold, senior positions within the state’s child welfare system. It named a former and the current Commissioner for Women and Children Affairs as close relatives who were aware of Chilota’s circumstances and health challenges but allegedly offered no assistance, despite repeated appeals.
According to the statement, plans to publicly challenge what it termed official indifference were shelved following appeals from political stakeholders who urged restraint in the interest of the state government, with assurances that corrective action would follow. The association said such action never came.
APLSCD further alleged a pattern of neglect by the Ministry of Women and Children Affairs across successive administrations, accusing the ministry of failing to provide any meaningful safety net for vulnerable children living with sickle cell disorder.
When the burden of care became overwhelming, the association sought help from Chilota’s home local government, acknowledging support from some local officials and individuals. It noted, however, that the assistance she received from outside her family far outweighed anything offered by her relatives.
Traumatised by feelings of rejection, Chilota eventually left the orphanage and returned home seeking answers. Instead, the association said she was allegedly forced to fend for herself, working under harsh conditions unsuitable for a child with her medical needs. Deprived of proper care, nutrition and medical attention, she reportedly died after a period of severe hardship. Her burial, the statement added, was conducted quietly without informing the orphanage that had cared for her for years.
The association is now calling for an independent inquiry into the circumstances surrounding Chilota’s death and has appealed to the wife of the Anambra State Governor to intervene to protect orphaned children living with sickle cell disorder. It also urged the state government to overhaul the Ministry of Women and Children Affairs and ensure that appointments to welfare-related offices are based on empathy, competence and integrity.
APLSCD further challenged church leaders and civil society groups in the state to demand accountability and to question why non-governmental organisations continue to shoulder responsibilities that should rest with public institutions.
“Chilota Ezikwelu’s death must not be reduced to another statistic,” the association said. “It should mark a turning point in how society treats the most vulnerable. We will continue to speak until sickle cell warriors are accorded the dignity and protection they deserve.”