The saying ‘Children are gifts from above’, can be said to be true in the case of Ediddiong, a talented child born to the family of the Williams in July 1999.
Like every other child she came into this world healthy and medically fit. But, within the first four months of her life, it became obvious that she was missing expected developmental milestone of a normal baby, such as; difficulty in breast feeding, not being able to control her neck, and then sit like a baby should, she began diminishing also, in size. This being a great source of concern for the parents, they were forced to visit several hospitals in search of proper medical intervention. After several recommendations and prescriptions, they were advised to enroll Ediddiong at a home (ModupeCole/Home for the Disabled). But, because of the love the parents had for her, they could not abandon Ediddiong and therefore, decided to take her back home where they continued to seek for possible ways to make her life better. They were later referred to Massey children Hospital where she’s booked for therapy every two weeks.
Being a unique child, she started developing gradually with massage and other therapeutic activities such that she could grab a cup, stand with little support and talk a little. This improvement made the parents to search for a school for her. But most schools rejected her due to her condition, eventually Ediddiong was admitted and started her educational journey at the age of 10 in Nursery one at Baptist Memorial Nursery & Primary School at Lagos Island. The educational environment has added a lot of improvement to her life as she walks to and fro school by herself unlike before. She began to listen and reply a little less audibly. In spite of her condition and challenges, she has pulled steadily and brilliantly through her primary education and is about writing common Entrance Examination to College, at the age of 15, defeating her all odds.
Ediddiong is just one out of 17 million people across the world living with cerebral palsy (CP) while another 350 million are closely connected to a child or adult with CP, making it easily, the most common physical disability in childhood. Cerebral palsy is also a complex disability in that one in four children with CP cannot talk, one in three cannot walk, one in two has an intellectual disability while one in four has epilepsy. According to Mrs. Alaba Gbadebo, Co-founder of Benola, A Cerebral palsy Initiative, the developed countries have a prevalence rate of two to four per 1000 births. With a prevalence rate of five to 10 per 1000 births, it is estimated that Nigeria currently has about 700,000 Children living with CP and an additional 3.5million, (including 1.4 million parents) that are closely connected to a child with CP. Gbadebo stressed that Cerebral palsy is real and it exists all over Nigeria, affecting all levels of society, but added that the health condition has no cure.
“As of today, the condition has no cure. It is the most expensive childhood disability to manage. Many families often abandon affected children which further complicate matters for mothers who already have little or no means of livelihood,” Mrs. Gbadebo who is a mother of 18-year-old child, Olaluwa, who is living with CP lamented. Bemoaning, high level of ignorance about cerebral palsy, Mrs. Gbadebo emphasized on the need for increased awareness about the disorder. She said: “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,” she added.
Gbadebo relieving her 18 years experience in the management of CP, explained that the reality of the CP condition in Nigeria, the state of our medical facilities and the options available to families of children with the condition, made her organization- Benola to team with relevant experts and design a roadmap which is hope to 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,” Benola Co-founder added.
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, she noted. Concerning treatment and management, she said: “As of today, there is no proven cure for CP. However, evidence points to a multi-disciplinary approach, where interventions are aimed at treating and preventing complications which are likely to occur as a follow up to the condition, as being the best form of management for CP. She observed that though brain damage in CP may change as the brain and body develops, the extent of damage to the brain itself does not increase. Therefore, Gbadebo said treatment in the life of a CP patient is primarily focused on preventing the damage in the brain from prohibiting healthy development on other levels.
According to her, relevant healthcare professionals are critical to the effective management of the condition.
She also said that the healthcare professionals who form the multidisciplinary team for the effective management of CP are; physicians and clinicians, pediatrics, neurology, orthopaedic, ophthalmology, audiology, ENT and psychology (developmental and clinical). Others are physio-therapists, occupational and speech therapists, nurses, counsellors, dieticians as well as special educators. She further said that early detection of CP is very important in order for appropriate intervention to start early. Detection should start in the neonatal period through thorough new-born examination that includes early features of CP such as lethargy or hyper-alertness, poor sucking reflexes, seizures cataracts. “In infancy, features such as persistence of primitive reflexes, stagnation of head growth, and hand preference before one year of age are signs that warrant further evaluation for CP. However it is important to note that some babies do not show obvious signs right away.
“In such cases, CP only becomes evident when the baby reaches developmental stages of between six to nine months where difficulties in movement such as the preferential use of certain limbs as well as asymmetric or gross movement delays become clearly evident,” she said. Early intervention is vital in the management of CP because the brain, not being concrete in its development up to about the age of eight years, has the ability to re-organise and reroute many signal paths which may have been affected by the initial damage, she explained. Therefore, the earlier it has help in doing this the more successful it will be because research has shown that the earlier treatment begins, the better the chances affected children will have in overcoming developmental disabilities or learning new ways of accomplishing tasks which challenge them, she observed.
She noted that Ediddiong is among the few examples of beneficiaries of early detection, intervention, effective and successful management of CP. Speaking recently, during the World Cerebral Palsy(CP) Day, Uchenna Ogochukwu Makueke and Oluwabusola Claudia Akinsola, both Benola CP Ambassadors and are living with the condition, corroborated “Cerebral palsy is not a disease but a condition. One can achieve whatever he wants in life.”
Akinsola, is a project officer with Children Development Centre (CDC), Surulere and Madueke, a teacher at Open Doors Special Education Centre, Jos, Plateau State. Busola, was born August 1, 1981, and holds a Master’s Degree in International Economics and Trade from the prestigious London Metropolitan University.
The self-motivated team-player who is keen to take on new challenges had her first degree in Economics from Babcock University, Nigeria. Busola who has a number of Research works to her credit, has been working with Children Developmental Centre (CDC), Surulere, Lagos, as a Project officer, Since March 2012. Uchenna was born in Jos, September 29, 1975, and had her primary education at University of Jos Primary School before proceeding to Tempest Comprehensive High School. She later attended the University Jos and graduated 2001, with a Diploma in Special Education with upper credit.
Uche, as she is fondly called then served from 1998 to 1999 as a teaching assistant at the Special Education Model Teaching Centre of the University of Jos and has been a teacher at Open Doors Special Education Centre Jos, Plateau State, since 2001. Uche, who is the founder of the CP Society of Plateau State, has authored a book about her life, titled; “Miss Courageous” to help encourage families of children with CP. In June 2009, she attended a conference in South Africa where people with disabilities from all over Africa learnt to tell the story of their life digitally. According to Uche, her objective in life is to encourage families of children with cerebral palsy. Uche and Busola are success stories of early detection, intervention, effective and successful management of CP.
This story was published in Newswatch Times on March 19, 2015.