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Cerebral Palsy: Making the Weak Count

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IMAGE: A Cerebral Palsy patient getting prenatal care »



Cerebral palsy is a condition caused by injury in the parts of the brain that control the ability to use the muscles and bodies effectively. A roadmap, conceived by Benola, a non-governmental organisation devoted to adding value to the lives of people living with the condition, was presented to the public last week in Lagos, Godwin Haruna writes

Health experts say cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. Often, they added, the injury happens before birth, sometimes during delivery, or soon after being born. Physical symptoms typically appear in the first few years of life.   Infants with cerebral palsy (CP) are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile, or walk. Cerebral palsy occurs in one in every 300 children according to the American Centre for Disease Control.

Last week in Lagos, health experts, top government functionaries and foreign dignitaries met at the instance of Benola, a Cerebral Palsy Initiative, a non-governmental organisation sorely founded for the condition, to review the management of cerebral palsy in Nigeria. The condition is a central motor dysfunction affecting muscle tone, posture and movement resulting from a permanent, non-progressive defect or lesion of the immature brain. Experts say CP is neither genetic nor an infectious disease, and thus it is not contagious. According to them most cases are congenital, arising at or about the time of birth, and are diagnosed at a young age rather than during adolescence or adulthood.

Founder of Benola: A Cerebral Palsy Initiative, Air Vice Marshal Femi Gbadebo (Rtd) said though the condition is widely known and well managed in developed countries, the experience is not the same here. Speaking at the event to launch the Benola Road Map for Nigeria, Gbadebo said the general impression in Nigeria is that cerebral palsy is an alien condition while in reality, the condition is widespread, affecting every arm of the Nigerian society.

He said some of the organisation’s findings after interactions with families and other stakeholders include the following; cerebral palsy is real and exists all over Nigeria, as at today, the condition has no cure, it is the most expensive childhood disability to manage, a lot of men tend to abandon affected children which further complicates matters for mothers, who have little or no means of livelihood.

Others are that the general lack of understanding of CP in Nigeria has led to stigmatization and all kinds of family and marital problems for many, mostly in the rural communities; most children with CP are either born premature or manifest the symptoms in early childhood which calls for major improvements in antenatal, maternal and early child care, particularly in rural communities, adding: “If we are to avoid misdiagnosis and unnecessary expenditure by parents who will try anything in their desperation for a miracle cure. Communities, especially rural ones, lack adequate support systems to sustain affected families. Having seen the reality of the condition in Nigeria, the state of our medical facilities and the options available to families of children with CP, we at Benola worked with relevant experts and came up with a roadmap which we hope will help relevant authorities do that which is right and proper for affected children and their families.”

The founder stated further: “The cerebral palsy roadmap will educate policy makers about the issue at stake. It will also identify the programmes, opportunities and activities needed to help individuals with cerebral palsy and other developmental disabilities to achieve their full potential. The roadmap will encourage policies and laws that provide adequate support, access to services and resources and modifications to traditional systems so there can be used by individuals with physical or developmental challenges. It will also work to change upstream factors like laws, regulations, policies, and institutional practices, and standards that influence the personal health, environments and choices of millions of individuals.”

Gbadebo stated that the roadmap which looked at challenges and constraints that form barriers to the management of CP in Nigeria also identified key issues, goals and objectives which tend to negatively affect the rights of children with CP. It further explored areas though which the government at all levels could take responsibility for leadership and ensure that necessary tools for effective management of CP are in place. According to him, it also identified ways in which the organised private sector and the civil society organisations could also contribute towards the attainment of the objective.

On the long term goal of the group, Gbadebo said: “ We remain committed to building and helping to build model Cerebral Palsy Centres in Lagos and other parts of Nigeria with each centre having provision for a counseling and referral unit, a physiotherapy unit, an occupational therapy unit, a welfare unit, an assistive technology unit, among others.”

In a speech before he presented the roadmap to the public, former Attorney General of the Federation and Minister of Justice, Chief Bayo Ojo said the document is an eloquent testimony to a life of dedication to the service of mankind. Ojo said the document would change the landscape in the way we perceive the disability of cerebral palsy in the country forever.

He praised the trustees for a life of service, adding: “They have also gone ahead to create an institution that will secure our future and the future of our children’s children. This impressively fits into the words of Napoleon Bonaparte of France that ‘men are powerless to secure the future, institutions alone fix the destiny of nations’. It is said that it is not all that count in life that can be counted, as such, we should all hereby affirm very profoundly that we shall continue to make our lives count in altruistic service to our great country and mankind in general.”

Ojo enjoined all to continue to diligently commit themselves to uplifting and impacting our society by seeking ways of transforming in into the desirable highest standards that command respect and admiration.

In an interview with journalists at the event, wife of the founder of Benola, Mrs. Alaba Gbadebo said it is so easy to become overwhelmed by the suffering of others. Speaking on the project, she said there seemed to be so much need and wondered how small everyone’s small contribution could help. According to her: “Instead of shrugging our shoulders and thinking it is of no use to try to help, we should allow God to work through us. He is our eternal source of mercy and compassion. Let Him lead and use us where we are most needed. We will no longer be overwhelmed by the plight of the needy, but empowered to alleviate distress exactly where God needs us,” Mrs. Gbadebo counselled.

She pleaded for contribution from good-spirited people to make the roadmap a success and to give meaning to the lives of those living with cerebral palsy.

Benola Ambassador, Uche Madueke, who spoke on the occasion commended the foresight of the founder in trying to make lives better for them. Madueke, who spoke to a standing ovation said with appropriate sensitization and education, he now believes he could achieve his dreams in life despite his condition.

Article Credit: ThisDay Newspaper

Updated 5 Years ago

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