Empowering Osteogenesis Imperfecta Survivors with Mobility, One Child at a Time
Since its formation in 2016, the Osteogenesis Imperfecta Foundation (OIF) of Nigeria has been consistent in reaching out to empower survivors with mobility aids to enable them to lead independent lives. This year, OIF Nigeria Founder, Mrs. Tarela Aghanti, and her team gave out 314 mobility aids to OI survivors and people living with disability across Nigeria. Esther Oluku reports
The friction in the relationship between Mrs Rashidat Williams and her husband started in 2023 after the birth of Rashidat’s second child, Pee, who had multiple fractures at the time of birth. Upon consulting a local orthopaedics doctor, she was charged N150,000.00, a sum neither she nor her paramilitary husband had at the time. She decided to ask for alms at her local church where she was advised to take the child to the National Orthopedics Hospital, Igbobi, to seek professional help.
Sharing her experience with THISDAY, she noted that although she had been told at about seven months into the pregnancy that the child had traits of dwarfism which she had accepted as part of expectations for the baby at delivery, accepting the reality of the situation was daunting.
The struggles
Upon her first meeting with the doctor, she was instructed to observe the child and another appointment was scheduled for a fortnight from the date of the initial visit. Speaking with THISDAY, she said; “it took me days but I noticed that his eyes were so blueish and that he has weak bones.
“He was not growing. He would be two years old by June. He can’t walk. It took him a year before he could sit on his own. Sometimes, I would just dump him. I won’t lie to you. He would cry and cry and I didn’t know where was paining.”
On the second appointment, Rashidat was intimated about the rare condition of her baby and how she could better care for him.
She said, “The doctor sat me down and explained my child’s condition. He told me that he would have to be taking the medications and introduced me to the Osteogenesis Imperfecta Foundation Nigeria.
“He told me that I shouldn’t feel bad because then I was still ashamed of my baby. I had to love him as he is. I also tried feeling his body to know where the pain points are.”
Osteogenesis imperfecta
Osteogenesis Imperfecta is a Latin coinage describing a disease of the bone where bone tissues lack the required specification of collagen to enable balance resulting in deformation of the skeletal structure of the body. This condition also causes erratic fractures of the bone for no known reason.
The World Health Organisation (WHO) describes Osteogenesis Imperfecta as “a hereditary skeletal dysplasia associated with bone fragility, growth deficiency, and variable secondary features including pain and scoliosis.”
Research on this condition dates back to the nineteenth century with studies into its origin shown to be a result of hereditary or abnormal genetic mutations in the chromosomal formation of a child. Further findings also reveal that the condition is non-communicable and without a known cure.
WHO submits that OI is a spectrum disease ranging from type (i) to type (vii) and management options include the administration of Bisphosphonates vaccines. The most common type of OI is type (ii) OI with symptoms such as “an abnormally small stature, fragile rib cage and underdeveloped lungs.”
The Nigerian Medical Association’s stance on OI management
With over 65 per cent of Nigerians
multidimensionally poor, managing cases of Osteogenesis Imperfecta poses a burden for parents and caregivers who
are saddled with the responsibility of caring for their children.
With skyrocketing inflation rates and low incomes, parents and caregivers of OI children sometimes opt for euthanasia (the act of painless killing to end suffering) to put an end to the suffering of their children.
However, the Nigerian Medical Association in a journal published in 2023, states that the right to life is a basic human and child right and as such must be upheld as an ethic of the medical profession as a violation of this law is tantamount to murder and manslaughter.
The Nigerian Medical Association also advocates a multidisciplinary approach to caring for OI patients to increase their life expectancy. While this option is upheld by medical professionals across the world, low-income families with loved ones who suffer from OI may be challenged in accessing quality healthcare as a result of the huge financial requirements involved.
OIF Nigeria intervention
Speaking at the event themed, “Promoting Independent Life; Wheelchair Distribution’ which was held at St Michael, Raphael, Gabriel Catholic Church in the Satellite Town area of Lagos State, the Founder, of OIF Nigeria, Mrs Tarela Aghanti, stated that supporting OI survivors with access to healthcare, mobility aids and a community of love and kindness is key to building a more inclusive society for survivors.
Explaining some of the work OIF Nigeria does, she noted that “Every six months as a foundation, we provide Bisphosphonate medication for our children. We call it bone juice. We give them to strengthen their bones.
“That reduces the fracture rate that the child can have because sometimes a child can just with a sneeze have multiple fractures. With a sneeze, a person with OI can break a rib but with the continuation of that medication, it is possible to reduce the fracture even to an extent, completely stop fracturing.”
According to her, part of the challenge encountered in the course of providing access to healthcare for OI survivors is that public awareness of the ailment is low and in some cases, the beneficiaries had reached very critical stages before they came in contact with the foundation.
“We have had more than 50 survivors whom we cater for since inception but we have lost a few, especially the children that came to us very very late. They were in really bad states because of the absence of medications and some have been neglected for a very long time.”
Aghanti explained that as part of efforts to sustain access to healthcare for OI survivors, OIF Nigeria has secured a facility to aid postoperative care for survivors.
“We have just finalised discussions for a centre where we can have physiotherapy and occupational therapy for our children, especially after surgery.”
She noted however that to deepen access to more survivors across Nigeria, more enlightenment is needed as well as funding from private organisations and the government considering the huge financial requirements required to
“We are getting a lot of calls from the north. The foundation at the moment has a lot of restrictions to getting medications there because of the situation of the country but we are working on that again it all depends on finances because if the foundation doesn’t get finances to get the medication for the children, they won’t be able to get it.
“We are in dire need of the government supporting the foundation because these children are humans first of all and they need medical attention.”