The Association of Persons Living with Sickle Cell Disorder (APLSCD) has called on Anambra State Governor, Prof. Chukwuma Charles Soludo to come to their aid.
The association, led by its president, Mrs. Aisha Edward Maduagwu, made the call at the Sickle Cell Orphanage and Underprivileged Home in Agulu.
Mrs. Maduagwu said that the association has been a lone but loud voice of advocacy and an umbrella of protection for persons living with sickle cell disorder in Anambra State and beyond.
She lamented that persons living with the disorder were neglected and left to suffer the pains of a decision that wasn’t theirs until they came together under the loving arms of an association to fight and fend for themselves and their cause.
“In order to achieve this, we began the process of enacting a Sickle Cell Law for Anambra State,” she said.
“The organization approached the Anambra State House of Assembly with a Bill for an act to be established for persons living with sickle cell disorder.
“This act when enacted would protect their rights and also ensure that more persons are not birthed with this disorder that leave it’s victims in perpetual pain and agony.
“After long years of dilly dallying with the Legislative and executive arms of the Anambra State Government, the Anambra State Sickle Cell Act was finally signed into law in 2019.”
The association has recorded many successes for its members, including paying their school fees, building a vocational training centre in Agulu, providing them immediate and effective healthcare when they need them, and providing welfare needs for them.
In a bid to ensure that their members do not continue to suffer the degradation and neglect they often get from their families, the association created a home for her members during the height of COVID-19 that took about 24 lives of members due to outright neglect and abandonment.
APLSCD also provides accommodation, feeding, and access to medical care through NAUTH for members whose families have either thrown them out or become a thorn in their flesh because of their disorder.
In a vote of thanks, some of the children with sickle cell disorder, residing in the orphanage, appreciated Governor Soludo for enrolling them into the state insurance scheme.
While also revealing that sickle cell, although untreatable, is manageable, they appealed to the Governor and well meaning ndi Anambra to assist them live a longer and happier life like their fellow kids until God takes them home.