Benola: A Cerebral Palsy Initiative on Saturday flagged off its first National cerebral family forum with a promise to provide succour to victims of cerebral palsy and ameliorate the difficulties undertaken by the care givers.
The national cerebral palsy forum is basically meant to interface with families living with cerebral palsy children in order to develop a feedback mechanism as an effective palliative tool in the management and care of cerebral palsy.
Speaking at the event, the founder of Benola Palsy Initiative, AVM Femi Gbadebo (Rtd) pointed out that his effort was provoked by the pains and agonies of the people living with cerebral palsy and members of his family.
“ I will simply state that my wife, Alaba and I are proud parents of Olalouwa, a 17-year-old man who was born with cerebral palsy, a condition widely known and well managed in countries like Australia, the United States of America, Canada and most of Europe,” he said.
He regretted that in Nigeria, the government and other well-meaning individuals rather than providing assistance and succour to the physically challenged and sufferers, choose instead to stigmatise and therefore frown on some cultural practices which have combined to force parents who could offer proper care for such children to hide them from the public view, while those who can ill- afford the needed care either abandon the children or use them as tools for begging.
“Unfortunately, though its existence in our part of the world has been known to experts for quite some time, little has been done to alleviate the pains of those in our society who live with cerebral palsy and members of their families who care for them.
The reason for this is that in Nigeria and indeed most parts of Africa, stigma along with societal and cultural pressures often combine to force parents who can afford proper care for such children to hide them from public view.
Also those who can ill-afford the needed care either abandon the children or use them as tools for begging. In fact, it is my strong belief that this state of neglect is what contributes to a large extent to the high rate of infant mortality in our rural communities” he said.
Drawing from this experience as a father of a cerebral palsy patient, Gbadebo says it requires huge cost to care and maintain a cerebral palsy child even though the degree of complications varies from victim.
“From experience and well documented facts, we know that countries in the western world have a lot in place to help improve the lives of persons with disability, some of which include but are not limited to provision of care, covering both medical and living costs.
“A number of such countries are even known to have well established, ‘Assisted Living Programmes’ through which direct assistance is provided to ease the pain of living with limitations while in some cases, parents or family members are appointed and paid to act as full time carers for their loved ones,” he said.
He pointed out that what the centre is doing presently is to build a roadmap and capacity in order to undertake enormous challenges envisaged ahead.
“We have since our Public Presentation in February 2013, been working to build credibility and raise public awareness about Cerebral Palsy. We have also continued to build internal capacity and are currently working to establish a Road Map for Early Detection and Better Management of Cerebral Palsy in Nigeria. The Road Map which we hope to have ready by December 2013 is scheduled to be presented to the Nigerian public in February 2014,” he added.
He assured that plans are underway to build a purpose cerebral palsy centre, which will serve as resource centre both for research and information
“In all, our ultimate goal at a later date is the commissioning of a purpose built Cerebral Palsy Centre in Lagos, Nigeria to serve as a regional centre of excellence for services such as counselling, assessment, care and management as well as the production of specialised equipment to assist those living with Cerebral Palsy and other limitations” he added.