Grace Wangeci and Wanjiku Karanja have one thing in common: both are grandparents taking care of children born with Cerebral Palsy (CP).
Their roads met when their daughters delivered children with CP, but were unable to take care of them due to the high cost that comes with managing the debilitating condition.
The fathers had also disowned the children, leaving their helpless mothers with no one to help.
With no one to take care of the children, their grandmothers, currently members of Cerebral Palsy Warriors Family, a self-help community group based in Karatina, decided to wade into the murky water and salvage the situation.
“My granddaughter, who is now 15 years old, was born with cerebral palsy. When doctors discovered her problem, they advised that the only hope for her was intensive therapy. By then, she used to cry throughout and could not eat anything. Her mother almost gave up on her. But I decided to step in and save the situation,” says Wangeci.
Her resoluteness finally paid off. After six months of therapy and home care, the girl has made remarkable progress.
She can now eat on her own, sit up, and even watch favourite children’s programmes on TV without much strict supervision.
Despite the fact that she is still deficient in many other things, such as toileting, Wangeci calls such milestones a miracle, noting that CP is a debilitating condition that is complex to address.
But she commends the founders of Cerebral Palsy Warriors Family for the novel idea of opening the Care Center, without which, she believes, her efforts in taking care of her granddaughter would have been futile.
“This group has been a lifeline in the care of this girl. Before they came around, I was struggling with hypertension and diabetes and was overwhelmed by the world.
This group has been of much help since we can gather and discuss ways and means of addressing our challenges and find ways of solving them as a family.
My daughter got married again and her family were categorical they would have nothing to do with a deformed child. I had no choice but to take up the responsibility,” she explains.
Wangeci is also grateful to the government after she was put on the Cash Transfer programme for Persons with Severe Disability (CT-PWSD), a move that guarantees her a Sh2000 monthly stipend.
The Cash Transfer helps in complementing the little she gets from doing jobs and ensures her granddaughter has some food on the table.
Besides catering for basic expenses, the money also helps in the purchase of other necessities like diapers and paying medical expenses for the girl.
Wanjiku’s story is not any different. She is currently taking care of her 15-year-old grandson after her son-in-law claimed that he could not take care of the child due to entrenched poverty and social stigma on the child’s condition.
But her decision came with its share of problems after her own children distanced themselves to the point of disowning her.
They claimed she was taking over a responsibility that was not hers; at times she could not even provide for herself.
Her plea to make her family change their mind on the matter fell on deaf ears, making one of the sons relocate from the home.
He argued that he could not sit back and watch as his mother exposed the family to ‘public ridicule’.
“By the time I took over the care of this child, his condition was terrible. He had defaulted on treatment and used to convulse at least 10 times a day.
His poor state of health meant I was more often in hospital than at home. Though my decision had strained my relationship with my family, I had to make this hard choice, since it was the only noble thing to do at the time,” she points out.
Her cry is for the government to come to the aid of caregivers taking care of CP children through the provision of free medication, toiletries and foodstuff, especially to poor families.
Wanjiku also called upon members of the public to accept children born with this condition and stop ostracising them like lesser mortals.
“My appeal to the society is to stop stigmatising children born with cerebral palsy or any other form of physical or mental deformity. No one in his/her wildest dream would wish to find himself in such a situation. Things happen. Therefore, let us show such children love and support their families if possible, wherever we come across them,” she advises.
Esther Wambui Kariuki, who is a caregiver and one of the founders of the Cerebral Palsy Warrior Family, says she is grateful at how far they have come since they formed the organisation in October 2024.
From scratch, the group now boasts of a total of 25 children under its name.
But noteworthy is the synergy and mutual assistance the members have enjoyed as a unit, including attracting donors to advance their cause, such as tackling the challenges that affect families living with children with CP.
“We decided to form this group after realising that we could not be of much help while struggling as individuals. Strength is found in numbers. We also realised the government could never notice us unless we organised ourselves into a registered group with a common problem and clear goal.
After the formation of this group, we decided that we shall not be dependent on anyone, but we shall pull together and assist each other in our common challenges as a family. And one year down the line, we can say a great deal has been achieved,” she narrates.
Through this initiative, Kariuki says, most of the children who had delayed milestones, such as in feeding and relieving themselves, are now making remarkable progress.
In addition, the group has managed to create awareness among the public of the need for society to embrace children born with CP, a clarion call which is slowly catching up with the masses.
She says an indifferent society to the plight of such victims remains the greatest impediment in helping them.
“One of the problems we are facing in the country as far as managing cerebral palsy is concerned is lack of information.
For instance, medics who handle mothers who give birth to children born with the condition rarely disclose the information to the family, leaving them to unravel this on their own,” she points out.
“To address such gaps, my advice to parents is this: stop hiding your child at home for fear of what others will say. Come out and join a community of persons with similar problems, where your voice can be heard far and wide. Only by uniting on this common denominator can we eradicate this stigma against children with CP.”
Cerebral palsy is a condition caused by damage to or disruptions in the development of brain areas responsible for muscle control.
Doctors attribute the condition to an infection such as meningitis or a head injury.
According to the Centers for Disease Control and Prevention (CDC), the condition affects 1 to 4 children in every 1,000 children globally.
The condition can happen before, during or shortly after birth or in the first few years of a child’s life, when the brain is still developing.
When it strikes, it affects movement and posture.
The Cerebral Palsy Alliance Research Foundation estimates that about 18 million people in the world have some form of cerebral palsy.
A recent population-based study by the US Centre for Disease Control and Prevention (CDC) on the prevalence estimates that 1 to nearly 4 per 1,000 children in the world have CP.
The CDC notes that cerebral palsy is the most common motor disability in childhood. Locally, it is estimated that about 150,000 people are living with the condition.
However, in Kenya there are no official statistics on the prevalence of the condition.
By Samuel Maina and Wangari Mwangi
