Chikaodili Ugochukwu is the founder of Flora’s Trust Centre, located in Lagos, Nigeria. This centre aims to support children born with cerebral palsy and help give them better outcomes in life and their health. The centre also aims to support parents of children with cerebral palsy, allowing them some respite and helping them to focus on work or other aspects of life needed for upkeep.
Flora’s centre was born out of Chika’s lived experience as a mother to a child with cerebral palsy.
Here is her story:
I am the 4th child of my parents. My mother was a matron and my Dad was a Professor of Biochemistry.
I became a lawyer, worked for a Law firm and eventually set up my own law firm. I remained in practice until the birth of my son.
At the time I got pregnant with my son, Arinze at 36, my career was doing really well. Finding out I was pregnant made me happy and grateful. I had planned to quickly give birth to my son, wean him and rush back to work for our upkeep.
However Arinze was born blue-black, and he suffered birth Asphyxia, a result of my placenta failing to supply him with enough oxygen to the brain. This was due to medical malpractice by my Doctor who failed to calculate our dates properly and I was seriously post-dated without realizing it.
I realized that my son had suffered brain damage at birth resulting in multiple medical complexities and needs.
It has been a rough and challenging journey raising a child with cerebral palsy here in Nigeria through childhood and adulthood.
My biggest challenge has been my loss of income and ability to work and engage in business as I became the primary caregiver of my son with severe cerebral palsy, who requires assistance in all areas of daily living, from medical needs, frequent hospital visits, specialist and consultant advise and therapies, physiotherapy, occupational, speech, selective special foods and antiseizure medications.
However, through my faith, love and support from family and friends, an optimistic attitude, attention to detail and expert advice we have forged on.
Inspired by the birth of my son, following his diagnosis of cerebral palsy over seventeen years ago, I founded Flora’s Trust centre for children with cerebral palsy. It was named after my mum, Mrs Florence Ifeyinwa Ugochukwu, for her unwavering and unconditional love for my son Arinze. Her immense affection towards him, helped my other siblings and family members accept his condition and love him unconditionally.
When my mother died, it was very sad and traumatic, because I felt that with the love she had for my son, she would remain my backbone of love, support and encouragement.
I would like to use my life and experience to make an impact. I want to use my experience to enable others to have the resources and facilities which I did not have when I had my son, Arinze. I want to create for other children and their families the resources which I wish I had when my son Arinze was born. At that time, I was left confused and uncertain as to what to do with a child with complex medical needs.
Bewildered and lost, I quickly came to the realization that in the entire landscape of Lagos, Nigeria, there were no such facilities to care for such children, who make up a significant number in society.
As a result, parents of such children have no choice but to become primary caregivers of such children, rendering them poor and unable to provide for such children and indeed the whole family, as they are unable to continue work or business, as no helpers are willing to look after such children at home.
The needs of these children are enormous and complex, from anti-seizure medications, diapers, specialized therapies and daycare.
Sadly, seventeen-plus years later as the lone caregiver of my now 18-year-old son, I realize the overwhelming need for such centres in Lagos and indeed all over Nigeria.
At our centre, parents can drop off their children and go out to work or run errands; allowing them to resume some form of productivity.
Furthermore, centres like ours provide medical care, specialized therapies and daycare under one roof as transporting such children from one location to another is very difficult and prohibitive.
We work out treatment and educational plans for each child, ensuring early intervention for each child, which will give them a healthy start in life and a better stretch and outcome in life.
Children with cerebral palsy can be educated and can also be given vocational training to enable them to become meaningful and useful members of society.
My mission for Flora’s Trust Center for Children and individuals with cerebral palsy is to provide information, support and assistance to parents, and caregivers of children living with cerebral palsy and other disabilities. To nurture all children with special needs in a safe, inclusive and supportive environment, through education, therapeutic interventions and community acceptance.
Unfortunately, there has been no support from organizations and the Government. We rely on small personal earnings, and love from family and friends.
As parents and caregivers of children with special needs, we are not heroes. We are exhausted, overwhelmed, determined, passionate and loving parents who experience grief, hope, struggle and joy on a daily basis, and there are moments when we absolutely want to quit. But we don’t quit, we adapt and survive.
There needs to be efficient and high-standard hospitals, care centres, daycares and schools that cater to the multiple needs of our children living with cerebral palsy and other disabilities.
Mothers of children with special needs need better support from the government and society.
Parents of children with cerebral palsy face challenges such as loss of income, high cost of living due to looking after children with cerebral palsy, treatments involving expensive therapists, specialists and adequate nutrition.
What support and resources would you hope to get for your organisation?
We need and hope to get more funding to take care of overhead costs such as accommodations, payment of staff and caregivers, therapists and doctors, special needs equipment, wheelchairs, bath chairs, standing frames, sensory equipment, wheelchair-adapted buses etc.
When Centers like ours are well funded, we will be able to take care of these children to bring out their best values and potential and integrate most of them back into society as independent individuals.