I want to help children with cerebral palsy cope with life'

Wednesday March 18 2020
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Nancy Mungai, who runs Agape Special Center in Kahawa West, Nairobi, during an interview on February 1, 2020, said she hopes the students will be able to be independent. PHOTO | PAULINE ONGAJI | NATION MEDIA GROUP

By PAULINE ONGAJI

I meet Nancy Njoroge Mungai at Agape Special Centre, which she founded and runs in Kiamumbi in Kahawa West, Nairobi County.

As you enter the institution, which sits on a quarter-acre piece of land, it is difficult not to notice the vibrant colours, mostly of children’s playground equipment, as well as the brightly painted walls.

As I enter, I hear an odd groaning sound coming from one of the toilets, just next to the gate. I’m told that is one of her pupils, a boy who suffers from cerebral palsy, relieving himself.

While a visitor might find the sound disturbing, it is normal for Nancy, who has been offering both therapeutic and educational services to children with the condition for nearly seven years.

She’s waiting for me in the therapy room, a fairly large hall consisting of a number of cerebral therapy devices like walkers, rollers and balance balls.

PARENTS' RELIEF

Also prominent in the room are the photos of every student who has passed through her hands.

As we talk, she points at different pictures and gives a brief story about that smiling child whose image stares back.

And their stories are varied, ranging from success stories of those who improved in terms of walking and feeding themselves, or even joining normal public schools and sitting the Kenya Certificate of Primary Education exams, to those who dropped out due to lack of school fees, or were withdrawn by their parents after showing no signs of improvement.

“It is the ebb and flow that keeps me hanging on to this job and wanting to do more for these children because I know life is a sequence of ups and downs,” she says.

Most of the children have to be helped to do even the most basic activities, like walking, eating and going to the toilet.

“It can be quite a challenge for parents who also have to work and take care of their other children, so by taking in their children, I offer such parents some relief,” she says.

BLUE BABY SYNDROME

Her motivation is borne of experience. She first opened her doors in 2014, having gone through the challenge of raising her second born son, who developed cerebral palsy in childhood.

“It was challenging getting a school that would offer him the best services. I went up and down looking for a school. I visited different places, including Nyeri, Embu, Rongai and Ngong, looking for a learning institution for my child without success,” she says.

This motivated her to come up with services appropriate for her son’s needs. “It forced me to quit my job with an insurance company to take full-time responsibility for my son,” she says.

Her son, Clinton, now 19, was born normal, but after being discharged from hospital, he developed a cough, which was thought to be normal flu.

“My husband and I took him to hospital several times but the cough persisted. When he was five months old, we were advised to see another doctor, who noticed that my son was suffering from blue baby syndrome,” she says.

The condition is caused by a reduced amount of haemoglobin in the blood, causing the baby’s skin to turn blue.

STRESSFUL PERIOD

The doctor recommended open-heart surgery, which would be carried out in India. “In the meantime, the only remedy was to fit a pipe in his heart so that he could grow and gain weight in readiness for the operation,” she says.

Then, at one-and-a-half years, Clinton was taken to India for the surgery. “At the time my son was normal. He could walk, sit and call us. But things changed after the surgery, since he could not breathe on his own,” she says.

What followed was another surgery she says was done without their approval, aggravating their son’s medical problem.

“Immediately after we came back, we signed up for therapy sessions at Kenyatta National Hospital, which were scheduled for Mondays, Wednesdays and Fridays,” Nancy says.

During this period, she was forced to employ two househelps, one to take care of the household chores and the other to take care of Clinton, including taking him for therapy whenever she and her husband could not take time off from work.

This went on until Clinton was seven years old, when they decided to stop the sessions and take care of him themselves.

“He had grown older and carrying him around was taxing. It was also quite expensive hiring a taxi every time we needed to take him for therapy, and then paying for the hospital’s services,” she notes.

AGAPE'S BIRTH

Meanwhile, her attempts to find him a school were fruitless. “The special school I had in mind couldn’t accept him because he was seven, which they considered too old,” she says.

Even the school that was recommended to them couldn’t keep him because he was too dependent.

“It was a boarding school outside Nairobi, and after a week, they called us to go and pick him up because they couldn’t handle all his needs,” Nancy explains.

They got a therapist to treat him at home, and after two years, there was a lot of improvement. “This was great for us, so we went to a school next to our home and asked for some space to enable our son to socialise with other children. They gave us one room, which we partitioned into a classroom, a therapy room, a toilet and a learning area, and that’s how Agape Special Centre was born,” she adds.

The numbers started rising when they got two more students. In the second term, they got another three.

“After two years, the parents started asking me to start a boarding school, as the numbers continued increasing. Sso last year, we moved to this piece of land which we’ve leased,” Nancy says.

SOLDIERING ON

Although she prides herself on having made a difference in the lives, not just of the children but of their parents as well, it has not been easy.

“It costs a lot of money to buy the daily necessities, and also pay the workers, who include a therapist, three special teachers, three caregivers and a driver. Things get worse when some parents cannot afford to pay the small amount we charge,” she says.

Nancy adds that they cannot adequately cope with the high number of students. But this does not deter her from ensuring that every student gets help that will enable them to become more self-reliant.