Every morning, as the sun gently peeks through the curtains, my sister greets the day with a warm smile, glowing hope despite her challenge. With a bit of assistance, she rises from her bed, ready to take on the day. She loves choosing her outfit for school, and with a little help putting on her shoes and zipping up, she feels a sense of accomplishment.
At breakfast, she confidently takes her spoon, relishing the joy of eating by herself without support while occasionally making little messes with her food that we all, as a family, cheerfully clean up together. Her wit and humour sparkle and she enjoys friendly banters with me (big sister) and the rest of the family, filling the household with laughter and love. As she heads off to school, she embraces the support offered by her teachers and peers, enjoying the friendship she shares with them. Despite her unique circumstances, she interacts with everyone just like any other person would.
Throughout the day, she tackles her studies with interest, often surprising teachers with her determination to learn and excel. Even in the face of challenges, she embraces each moment, teaching people around her both at school and home valuable lessons about resilience and the beauty of cherishing life’s little victories.
After school, she engages in her favourite hobbies and activities, showcasing her creativity in tech and zest for life. When it’s time for bed, she may need a little help getting ready, but she always expresses her gratitude for the love and support she receives.
My sister’s daily routine is a testament to her strength and the incredible spirit she embodies regardless of her cerebral palsy condition. Her ability to do things for herself with a little assistance demonstrates the power of determination and the solid support of a loving family. As we watch her grow and flourish, we realise that she is not defined by her condition; rather, she is an extraordinary individual with a heart full of joy and gratitude, inspiring everyone around her to appreciate life’s blessings and embrace each day with a smile.
Cerebral palsy, often referred to as CP, is a collection of conditions that impact a person’s movement, balance and posture. It is the most prevalent motor disability experienced during childhood. The term ‘cerebral’ relates to the brain, indicating that the inability involves challenges with parts of the brain’s functions. ‘Palsy’ points to weaknesses or difficulties in using the muscles. This condition arises from irregular brain development or damage during brain development, affecting an individual’s ability to control their muscles and movements. In a human context, it means that children with cerebral palsy may face challenges in their physical abilities, but they also possess unique strengths and qualities that make them exceptional individuals.
As a result of my sister’s condition, I have devoted time to the study of cerebral palsy at my young age. CP comes in three main types, each with its unique characteristics. ‘Spastic CP’ is the most common type, affecting about 80 percent of individuals living with CP. People with this form experience increased muscle tone, making their muscles stiff and their movements somewhat difficult. Next is the ‘Ataxic cerebral palsy’. For those with ataxic CP, balance and coordination become challenging. They might appear unsteady while walking or find it difficult to perform quick or precise movements, like writing. Controlling their hands or arms when reaching for something can also be tough. Lastly, there is the ‘Athetoid CP’, which results in involuntary muscle movements. It is the second most common type and can cause individuals to struggle with controlling their body movements.
Each person living with cerebral palsy condition is unique, and these descriptions provide an overview of the different ways CP can manifest. Despite these challenges, individuals with cerebral palsy have their own strengths and abilities, and they deserve understanding, respect and support to thrive in their daily lives. Living with a sister with a CP condition, I have come to admire that they are special people and individuals who, like everyone else, deserve acceptance and compassion. In my study of the condition, I was disappointed to find that there is no cure for CP at the moment despite all the advancement in science. But treatments can make a big difference in the lives of those living with the condition, especially in early intervention.
My sister is privileged to have a family that lends hundred percent support daily and goes to a special school that has a support system in place for her to thrive. My desire to probe further into challenges with persons living with CP was intensified when my mum took my sister and me to visit less-privileged children with the condition at a care home in Teshie, a suburb of Accra.
The owner of the home is a member of the Special Mothers Project, a group that creates awareness and provides support on cerebral palsy issues in Ghana. The children at this care home have very limited support because their parents cannot either afford the cost of sending them to special schools or equipment to provide aid to them.
I was touched by what I saw and decided to do something to help as well as raise awareness about cerebral palsy. Even though living with CP comes with its challenges, with the right care and support, people with this condition can lead happy and fulfilling lives and achieve their dreams.
There’s hope for the future too, as researchers are continuously working on advancements that might further improve the lives of those living with CP. Being a supportive friend to someone with cerebral palsy can really make a difference in their life and bring you closer together. One of the most important things is to take the time to understand what cerebral palsy is and how it affects them.
Just like with any friend, there is a need for us all to be patient and understanding with persons living with the condition. It’s always good to ask if they need assistance with specific tasks like opening doors or carrying things, but also be okay if they prefer to do things independently.
Let us also treat them just like any other friend by inviting them to join in on social activities and events. Emotional support is incredibly important too – just being there to listen can mean a lot to them and my little sister is a good example of what I am sharing. It is important to remember that individuals with cerebral palsy, just like us, are individuals with emotions and should be treated with love and care.
Since every child’s situation is unique, there’s no one-size-fits-all solution. It is against this background of need that my young foundation – Afrakoma Foundation – seeks to bring experts, care givers, parents of persons living with the condition, service providers as well as health and education policy-makers together on August 30 at the British Council Auditorium to deliberate on how we can support our children, siblings and patients living with cerebral palsy.
I believe that if we commit and take action now, it will save many lives and help many more living with cerebral palsy realise their dreams.
The writer is a high school student of Association International School. Amani is also the founder of Afrakoma Foundation, which seeks to improve the lives of individuals with cerebral palsy in Ghana by promoting inclusion and belonging as well as advocating for policy changes and advancing research and education on cerebral palsy.
