Parents of children with cerebral palsy get support through group on mobile app

Watching Miriam Nakero welcome Beatrice Ayuma to her Amalemba Estate home in the heart of Kakamega Town, one would think they are childhood buddies who are meeting after a long time.

For about two minutes following the excited greetings and warm embraces, they get into a stoic conversation as Ayuma, who is in her 50s, gives what looks like a pep talk to Nakero who is in her 30s. When they end the conversation, Nakero looks relieved and almost satisfied.

We later learn that Nakero had posted a distress message on a mobile chat platform they share --that she was breaking down, she was giving up, she was overwhelmed after her efforts in trying to improve the status of her cerebral palsy son failed.

"I had taken my son for correctional hand surgery but the hand worsened and he seemed to be convulsing so often even when I gave him medication as required. His leg was also hurting. I felt so low and posted on the group about it some days back," Nakero tells Health & Science.

"In no time, messages of encouragement started flowing in from the group members who are mothers and guardians of children with CP. Some even shared similar low points they had suffered in the course of nursing their children and I felt I was not alone; my spirit was inspired," she adds.

She says she finds the Group "Kakamega CP parents" a home and refuge whenever she feels low and that she has made friends like Ayuma who has two children with a similar condition, one mild and the other severe CP.

Ayuma, a teacher at a special school in Irumbi, Kakamega was inspired to take up the profession after giving birth to the first child with mild CP. She developed the desire to help such children and enrolled for a special school teaching course.

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The teacher, who has taught special children for over two decades, is among the founders of the group that has seen about 20 parents within Kakamega Municipality link with one another and share their experiences as they raise special children.

"The anticonvulsant drugs that most of our children use get finished at times and you are short of money to replenish them. At other times, the medication is not even in hospitals or pharmacies and you have to borrow from one of the parents in the group. I have done so several times and got assistance," Ayuma says.

"We also get heads up on which chemist stocks medication common for CP people at affordable rates and even friendly hospitals to take our children for physiotherapy and other related care. Through the group, we found a physiotherapist who walks to our homes and does the exercise at home rather than in the hospital," she adds.

By having the physiotherapist do the task at home, the parents save on transport costs to hospitals and even on having to deal with unfamiliar staff at the said hospitals.

Some of the parents recounted to Health & Science about how some public transport providers refuse to stop when flagged down to carry CP children who are often in wheelchairs.

Worse, some medics refuse to do physiotherapy on their children claiming they are hyperreactive.

"But the majority are willing to do the physio sessions which are done at least twice a week on CP children and cost at least Sh1,500," says Ayuma.

The group, Health & Science discovered, also helped the parents and guardians of CP children to shop around for good househelps and caregivers of their children.

Victoria Khaoya, Nakero's neighbour in Amalemba Estate says it takes more than your average domestic worker to work in a house with a CP condition.

"Ask any of us - we have employed countless househelps as many give up on the way even as you pay them far more because of the special care they give to your CP child who happens to be fully dependent," says the mother of a 20-year-old CP child. "They wash, nap, feed and even turn them on the bed while they sleep."

She regrets that the condition of people with CP deteriorates when they are put under unfriendly caregivers.

"If they get a friendly caregiver you realise the amount of say, saliva drooling, reduces but if the caregiver is unfriendly, the drooling gets worse similar to speech. If they had started mastering speech, they would stop or reduce speech if under an unfriendly caregiver," Victoria says.

Not only that but guardians and parents of the CP children, especially those who report to work outside the home have to step in and help the caregivers as the task is extremely demanding.

It's on this ground that Ayuma also ensures the children of her members don't stay at home, especially in homes with "unfriendly" house girls but go to school where they get to interact with others and meet speech therapists to help them develop some milestones.

Dr Jeff Ombonye says CP is caused by damage that occurs to the developing brain, most often before birth adversely affecting the development of affected children throughout their life.

The Centre for Disease Control (CDC) estimates that 17 million people in the world have cerebral palsy, making it the most common physical disability in childhood.

In Kenya, there are no specific figures for the exact number of cases even as some organisations like Doors of Hope say there are about 150,000 children with the condition in the country.

"Symptoms appear during infancy and vary from very mild to serious. Children with cerebral palsy may have exaggerated reflexes. It's so challenging to take care of such cases," Ombonye says.

"They need to, as they are doing, refer each other to good special schools, good speech therapists and even physiotherapists as the CP condition requires a multi-disciplinary approach to handle. Their unity may even help them get better deals in getting diapers, medicines and other supplies their children need through lobbying."

The medic, who is based at Bungoma's Hopkins Hospital, said the burden of caring for CP is "obviously" lessened tremendously by the mood of the group that came together to assist one another mentally and even financially.

He says that even as he has never interacted with such an initiative among the CP parents, the social support idea in medicine is not new as he has seen networks of families, friends, neighbours, and community members that turn up during medical situations to give psychological, physical, and financial help to ease the situations.

"I think they have a focused future which will see them enjoy the caregiving rather than regret it," he says.

And true to the medic's words, the group is now focused on lobbying for subsidised anticonvulsant drugs and dippers that their children need every so often.

"We will humble ourselves before the county and even national government and ask them to supply us with the medication and pampers for free or at subsidised rates because CP cases are fewer than those of people with say, HIV who get free ARVs but we pay dearly for our children's anticonvulsants," says Ayuma who heads the Group which also accommodates one parent Maulean Kabochi who has a child with Hydrocephalus.