Between a train and the station platform, there is a gap which if ignored, could lead to grievous bodily harm for commuters. To help prevent such an ugly occurrence, the announcement, Mind the Gap is made continuously on platforms of the London Underground.
Indeed, everywhere you care to look in life, there are gaps. But unlike the case of the London Underground, a lot of these gaps are left unattended because they don't directly affect us. We rather choose to gloss over them, give them a token glance every now and then or just plain pretend they don't exist while we struggle to make sense of our own lives. That unfortunately is the case with the disabled in our society, a unique group of individuals who hardly ever future in the budget and planning of both government and the corporate world.
Since Olaoluwa's birth in 1996, we as concerned parents, have lived the reality of seeking for first, a cure for our son's ailment and later, after years of search and better understanding of Cerebral Palsy, a way to give him the best possible form of existence under the circumstances in which we find ourselves.
In this quest and apart from being seen by numerous specialists in Nigeria, Olaoluwa has received medical care in the following countries:
In addition, we have taken advantage of our various visits to countries in, Asia, Canada, China, North and South America, South Africa as well as a number of other African countries to interact with experts, care-givers and manufacturers of Special Needs Equipment to see what could be done to improve the quality of life of our son.
What we have come to realise is the fact that, for those living with limitations in these parts, there is indeed a very serious GAP, because in their planning for infrastructure, health care delivery and social welfare, Government and indeed the private sector, often fail to make provision, for those living with limitations.
Furthermore, access to specialist care, facilities or equipment and affordable medication for those living with limitations are in poor supply and, where they are to be found in major population centres, are out of reach of the common man. The result is that for those born with limitations who manage to somehow survive early death, the quality of existence always fall far short of even the United Nations minimum standard, a situation that could have been different if better care and training had been made available to such individuals much earlier in life.
Given time and adequate resources, BENOLA intends to fill this GAP by using Cerebral Palsy as a platform to speak for those living with limitations, raising awareness on the need for attitudinal change by all concerned, being a part of the change process itself and making a case for appropriate legislation that will ensure a proper place for these unique individuals.
These amongst many others make BENOLA, an Idea whose time has come!!!
Born at 34 weeks gestation in Kano, Nigeria, Olaoluwa apparently had asphyxia at birth and a stormy neonatal period with, seizures. He also had psychomotor developmental delays. At Age 6 month, and following a series of examination his condition was diagnosed as Cerebral Palsy.
With time severe drooling, increased stiffness of the limbs and dystonic posturing involving the neck and trunk followed, resulting in a relatively fixed contracture of the joints of all the four limbs, an inability to lie supine in bed and a progressing side ward bending of the spine (scoliosis).
From birth, Olaoluwa also suffered regular bouts of seizures and as a result of his drooling, frequent colds and pneumonia which often led to brief periods of hospitalisation. By age 8, the seizures somehow disappeared only to reappear at age 14, after his Scoliosis surgery.
Feeding has always been fairly easy as he tolerates most meals painstakingly prepared by his mother but oral intake of liquids is a problem and by age 9, giving him his medication had become a major exercise. After major surgery, Olaoluwa's intolerance for liquid intake became acute and he had to be fitted with a Stomach Feeding Tube (PEG), which is still in place.
On 21 May 2010, aged 13 years and 10 months, Olaoluwa had a successful spine surgery followed by tendon release surgery on three of his limbs and the fitting of a PEG to aid nutrition, timely medication and ease of care.
Subsequently, a reasonable amount of flexibility returned to Olaoluwa's limbs and his sleep pattern improved. But he remains fully dependent, is still managed with diapers and presents occasional episodes of generalised tonic chronic seizures.In spite of all these limitations, Olaoluwa who has limited communication skills, consisting mainly of gestural expressions, few words and kisses to show approval, wakes up with a smile and is always in good spirits.