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 Farida-Bedwei does not let CP prevent her from doing the things 'normal' persons do
Farida-Bedwei does not let CP prevent her from doing the things 'normal' persons do

Living with cerebral palsy: The shock, agony and sacrifices

No one wants to be weighed down with any kind of disease, and even experiencing a mild headache for a few minutes is unbearable for many people.

Yet, there are people who do not only have to live with a disease for life, but they are born with diseases that make it impossible for them to live normal lives.

Listening to parents who have given birth to children suffering from cerebral palsy was not only heart-wrenching but emotional. It was close to tears as I shook my head in disbelief at some of the experiences they encountered because their children suffered that debilitating condition.

Cerebral Palsy (CP) is the most common physical disability in childhood and it is a permanent, lifelong disability that affects an average of one in every 500 live births but little is known about it in Ghana.

There are over 17 million people living with CP, tens of millions of family members devoting their lives to the care of their loved ones and tens of thousands of doctors and therapists involved in the diagnosis and treatment of CP.

World Cerebral Palsy Day is celebrated on the first Wednesday of October each year to draw the world’s attention to CP and the need for public policies that seek to ensure equal rights for people living with CP.

I was as ignorant as many are now about the disease, the first time a colleague spoke about it to me and asked me to help her champion the cause of people suffering from the disease.

However, it was when I was tasked by my News Editor to speak with a parent of a CP patient that I became enlightened on the disease and its effects – and I almost wept.

The agony of parents

“People sometimes refer to me as the father of a ‘water child’ or one who has fathered the child of a god. One day I had a misunderstanding with a colleague and he told me, ‘that is why God has punished you with a sick child’ and it hurt me deeply,” he recounted.

Mr Edward Amankwah, who was narrating his ordeal to the Daily Graphic, said as a result of his sick 15-year-old son who could not do anything for himself due to the disease, he and his wife had been called all sorts of names and had even been tagged as evil.

Despite the taunts and ridicule they suffer at the hands of others, they have been moved by the plight of others who are catering for children suffering from Cerebral Palsy to establish a foundation - the “Givers Never Lack Foundation” — to seek further assistance to cater for needs such as feeding, which could be very daunting because patients suffering from severe cerebral palsy are not able to communicate.

 CP children can mingle with other children in school.

On what motivated him to start a foundation, Mr Amankwah said: “Children with Cerebral Palsy are not demons or cursed; they are humans just like us. We must give special attention to them and should not subject them to physical and emotional abuses.

“In Africa and especially in Ghana, people with CP are misunderstood and stigmatised, making it very hectic for them to socialise with others. As a result of the stigmatisation and misunderstanding, some parents have been forced to take heinous decisions all in an attempt to exempt themselves from public ridicule.”

Another parent, Mrs Hannah Awadzi, who spoke with the Daily Graphic, said she could not bear her initial shock on realising her child had CP and she wanted to give in to despair.

But from despair she has been strengthened to encourage other women who find themselves in a similar situation, by embarking on the Special Mothers Project.

She says the project seeks to extend moral support and encouragement to mothers with CP children and then to seek help, since there is genuine help out there, share their stories and come out with their CP children.

“Too little money is being spent on prevention and supportive tools; too few doctors and therapists have the knowledge to diagnose and treat people with CP; too many families lack access to basic information and support; too few teachers have the training to ensure that people with CP get the education they deserve; and, perhaps most importantly, it is still far too easy to keep people with CP out of sight, out of mind and out of options in communities around the world.

“In many countries, including Ghana, people with CP are ‘invisible’. They live out of sight, out of mind and out of options.

“People with CP face superstition and they and their families live a life of exclusion; however, when they are given the opportunity, people with CP prove how significant it can be - not just for individuals with CP, but for everyone in the societies in which they live.

“In Ghana, Farida Bedwei is a classic example of a person living with CP yet is a renowned Software Engineer whose product is helping many in the Savings and Loans (Microfinance) Sector,” she stated.

Farida Bedwei is a classic example of a person living with CP yet is a renowned Software Engineer

Cerebral Palsy is not hereditary

Cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement, muscle coordination and balance.

It affects the part of the brain that controls muscle movements and the majority of children with cerebral palsy are born with it, and it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches age three.

The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy.

Other neurological symptoms that commonly occur in individuals with CP include seizures, hearing loss and impaired vision, bladder and bowel control issues, and pain and abnormal sensations.

A small number of children have CP as a result of brain damage in the first few months after birth, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse. The brain damage, however, doesn't get worse over time.

 Trying standing options is always good for CP children

Is there any treatment?

Early intervention, supportive treatments, medications and surgery can help many individuals improve their muscle control. Treatment may include physical and occupational therapy, speech therapy and drugs to control seizures, relax muscle spasms and alleviate pain.

Others are surgery to correct anatomical abnormalities or release tight muscles; braces and other orthotic devices; wheelchairs and rolling walkers; and communication aids such as computers with attached voice synthesisers.

Living with CP

Dr Marilyn Marbell-Wilson, a Neurodevelopmental Paediatrician at Mission Paediatrics, told the Daily Graphic that there were no statistics on people living with CP in Ghana, although she knew of several cases.

She indicated that in Ghana many children developed CP, which is caused by an injury to the part of the brain that controls muscle movement, after they have been born, but in the developed countries about 80 per cent of children develop the condition before birth.

Post-natal causes, she said, were the result of complications experienced during delivery where the child does not get enough oxygen into the brain and the cells there die.
Dr Marbell-Wilson said CP was also caused by jaundice in the brain of the child which affected the child’s action or occurred while the child was in the womb.

According to the paediatrician, what makes CP dangerous is the fact that it is only detected during the child’s formative stages when it is realised the child is unable to sit, move or speak.

“But the truth, unfortunately, is that we don’t have its cure. Once a part of the brain has been affected the brain doesn’t cure itself the way the skin cures itself,” she stated.

Dr Marbell-Wilson, however, recommended to parents who have children with CP to immediately see physiotherapists and other health specialists who could assist such children to lead normsl lives.

 Hannah Awadzi and her daughter celebrating World Cerebral Palsy Day 2015

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