Let me start by thanking the Advisory Board of Benola Cerebral Palsy Initiative and the Trustees Air Vice Marshal Femi Gbadebo (RTD) OFR and his wife Mrs Alaba Gbadebo for inviting me to present Benola's Roadmap for Cerebral Palsy in Nigeria today. I consider this an honour indeed.
I believe that history is being made today as this roadmap which is an eloquent testimony to a life of dedication to the service of mankind will change the landscape in the way we perceive the disability of cerebral palsy in Nigeria forever. If we take into cognizance the inspiring words of my friend Prof. Pat Utomi that “this life is a life of debt, the currency of amortization is service”,there is no doubt that the Trustees of this great initiative have paid their dues in this regard. 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 Nigeria and mankind in general.
We all must continue to diligently commit ourselves to uplifting and impacting our society by seeking ways of transforming it into the desirable highest standard that command respect and admiration. I consider this a commanding imperative, especially at this critical time in the annals of our national life. I urge us all to continue to get seriously and positively engaged in the crucial task of re-inventing our society in general by seeking to help those who are less fortunate than us by developing a culture of altruistic service.
Finally, let me commend the Advisory Board and all those who have one way or the other contributed to making this Roadmap a reality. I want you all to consider your effort as a great honour indeed and be reassured by the observation of Calvin Coolidge “that no person was ever honoured for what he received. Honour has been the reward for what he gave”.
In concluding, let me charge all of us present here today to be motivated for positive life and goals that have deep meaning; by dreams that need completion; by pure love for the common good that needs expressing in order that we may be considered to truly live life.
Distinguished ladies and gentlemen, it is my honour and privilege to present the Roadmap
Thank you.
FOUNDERS SPEECH
PUBLIC PRESENTATION OF BENOLA'S ROADMAP FOR CEREBRAL PALSY IN NIGERIA
27TH FEBRUARY 2014
I will not bore you with a rundown of who we are as that information is available in the program which you already have with you, neither will I go into the details of how Benola came into existence. Rather, I will simply re-state the fact that my wife, Alaba and I are proud parents of Olalouwa, a young man who was born with Cerebral Palsy some 17years ago.
And though the condition is widely known and well managed in developed countries, our experience has been that because it's not one of those medical conditions that people see every day and the fact that affected families, out of fear of stigmatization often prefer not to talk about it, 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. It's just that most people don't know what it is or the proper name for it.
To address this situation, we took steps to build in-house capacity, get a better understanding of the condition and experience firsthand, its effect on various groups in the country. As a result, we organized and attended stake holder's conferences, both local and international and hosted the first of its kind, cerebral palsy national family forum in Nigeria. We also held numerous one on one interactions with experts, families and other stakeholders in the field of childhood and other disabilities. At the end, we learnt a lot and I'm glad to say we're still learning.
Some of our findings these interactions include but are not limited to the following;
Cerebral palsy is real and it exists all over Nigeria, affecting all levels of society.
As of today, the condition has no cure.
It is the most expensive childhood disability to manage,
A lot men tend to abandon affected children which further complicates matters for mothers who already have little or no means of livelihood.
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 our 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. 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 Roadmap which looked at challenges and constrains that form barriers to the management of CP in Nigeria also identified key issues, goals and objectives which tend to have negative affects the rights of children with CP.
It further explored areas through which Government, at all levels could take responsibility for leadership and ensure that necessary tools for effective management of CP are in place.
Finally, it identified ways in which the organised private sector and Civil Society Organisations could also contribute towards the attainment of this noble objective.
Benola's Plans for the Future
Short Term
On our part, we at Benola, having succeeded in presenting the Roadmap intend taking it to every nook and corner of the country, starting with a presentation to a select audience in Abuja, the Federal Capital of the Federation, on 22 May 2014.
In addition, we remain committed to;
Intensifying our advocacy for the rights of children with CP
Helping to establish an authentic Database for Cerebral Palsy in Nigeria
Organising and participating in awareness campaigns aimed at raising awareness about Cerebral Palsy.
Facilitate Support Groups for families of persons with Cerebral Palsy
Building Capacity for various levels of health care professionals and
Building own capacity while establishing contact with relevant local and international agencies.
Long Term
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 Counselling and Referral Unit
A Physiotherapy Unit
An Occupational Therapy Unit
A Welfare Unit
An Assistive Technology Unit
Conference/Seminar Rooms
Administrative Units/Relevant Offices
Working to see that children with CP all over Africa get better recognition.
Finally, having come this far in a little less than 12months, it is our strong belief that the Almighty God who has used good people like you to help us get this far, will use Benola to do much more for children with CP in Nigeria and indeed the rest of Africa.
And so once again, thank you and God bless.
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