One woman's mission to help her daughter and others

Although Babatunde Fashola, fondly called Baba, is 22 years old, he is under 70cm (2ft 4in) tall.

He has cerebral palsy and needs lifelong care. He can neither talk nor walk and is fed through a tube attached to his stomach.

He was abandoned by his parents as a baby, but 10 years ago he found a home at the Center for Cerebral Palsy in the Nigerian city of Lagos.

“Grandma weighs about 12 kg (26 lb). He's doing well,” the establishment's founder, Nonye Nweke, tells me when I visit.

Ms Nweke and her staff work around the clock to support him and other young people living with permanent brain disabilities.

Despite the lack of official data, cerebral palsy is believed to be one of the most common neurological diseases in Nigeria. in 2017 a professor of medicine at the University of Lagos said 700,000 people had the condition.

For many of those living with cerebral palsy in the country, their condition is caused by a common phenomenon among newborns – neonatal jaundice.

This is caused by a build-up of bilirubin, a yellow substance, in the blood, which means babies' skin has a yellow tint.

Professor Chinyere Ezeaka, a pediatrician at the Lagos University Hospital, told the BBC that more than 60% of all babies suffer from jaundice.

Most babies recover within days. More severe cases need additional medical intervention – and even then the condition is easily treatable.

Children are primarily exposed to ultraviolet light to dissolve excess bilirubin in their red blood cells. The treatment lasts several days depending on the severity.

In Nigeria, however, this treatment is often not immediately available, which is why the country has the top five neurological diseases caused by untreated jaundice in the world, according to data from the World Health Organization (WHO).

Any treatment for neonatal jaundice “must occur within the first 10 days of life, otherwise (the condition) can cause permanent brain damage and severe cerebral palsy,” says Prof. Ezeaka.

To make matters worse, the West African country lacks facilities to care for people with neurological conditions. There are only three cerebral palsy centers, all private, in Nigeria, which has a population of over 200 million people.

Mrs Nweke – a single mother – set up the Cerebral Palsy Center after struggling to find support for her own daughter Zimuzo.

“When I took her to the nursery (centre), they asked me to take her back because other mothers would withdraw their children. As a mother I have to say it was quite devastating,” Ms Nweke told the BBC.

Zimuzo is now 17 years old and Ms Nweke's Cerebral Palsy Center provides ongoing support for others with similar experiences.

On the day I visit, colorful play mats and toys are neatly arranged on the floor. Mickey Mouse and his friends are chatting on a wide-screen TV in the living room.

Twelve youngsters, some as young as five, stare at the television, momentarily oblivious to their bright surroundings. They are all motionless and speechless.

At lunchtime, caregivers help the youth eat. Some receive liquid food through tubes attached to their stomachs.

Careful and slow, caregivers support their heads with pillows and push the contents of their syringes into the tubes.

The pups are fed every two hours and need regular muscle massages to prevent stiffness.

But they are the lucky 12 receiving free care from the Cerebral Palsy Center, which is funded entirely by donors.

The facility has a long waiting list – Ms Nweke has received more than 100 applications.

But accepting more youth will require additional financial support. The cost of caring for someone at the center is at least $1,000 (£790) a month – a huge sum in a country where the national minimum wage is around $540 a year.

“As a mother I have to say it's quite devastating. You have moments of depression, it gives you heartache and it is quite expensive – in fact it is the most expensive congenital disorder to treat,” says Ms Nweke.

“And then, of course, it keeps you away from people because you're not discussing the same things. They talk about their babies, walk around, enjoy those baby moments. You don't do that. You are sad,” she adds.

Mrs Nweke explains that she adopted Zimuzo from an orphanage.

A few months after bringing her new daughter home, Ms. Nuke realized that Zimuzo was not developing the same way as the children around her. She was examined in hospital and diagnosed with cerebral palsy.

Mrs Nweke was told she could take Zimuzo, then just a few months old, back to the orphanage and adopt another baby instead, but she refused.

“I decided to keep her and started researching what the disorder was, the treatment and the kind of care my child would need – she is my life.

“The doctors also told me that she would not live more than two years. Well, here we are – 17 years later,” says a smiling Mrs Nweke.

Lack of awareness and adequate medical care hinders the diagnosis and treatment of neonatal jaundice in Nigeria.

Ms Nweke also says the common local belief that children with congenital disorders are spiritually impaired or bewitched leads to stigmatisation.

Some children with neurological disorders – mostly in rural Nigeria – are labeled as witches. In some cases, they are abandoned in houses of worship or kicked out by their families.

Ms Nweke is not alone in her mission to dispel myths and improve care.

The Oscar Project – a charity aimed at improving the diagnosis and treatment of neonatal jaundice – recently started working in Lagos.

The project is named after Vietnam-born British disability advocate Oscar Anderson, whose untreated jaundice caused his cerebral palsy.

“We are equipping primary, secondary and tertiary healthcare facilities with equipment to treat jaundice, mainly light boxes, but also detection and screening equipment,” Toyin Saraki, who is leading the launch, told the BBC.

Project Oscar, supported by consumer health firm Reckitt, is training 300 health workers in Lagos. The hopes in the first year are to reach 10,000 mothers, screen 9,000 children and introduce new protocols to try to prevent jaundiced babies from developing cerebral palsy.

In a country where the public health system is overstretched, the government has had little to say about the disorder, although it praised the aims of the Oscar project.

Treating neonatal jaundice is significantly cheaper than the cost of lifelong care, doctors say.

First launched in Vietnam in 2019, Project Oscar has helped around 150,000 children in the Asian country.

Anderson, 22, says he wants to prevent other children from going through what he went through.

“Disabled people are not to be underestimated,” he told the BBC.

It works to ensure that every newborn is screened for neonatal jaundice and with the support and courage of mothers, midwives and medical professionals to ensure better understanding and faster treatment.

However, achieving this is an extremely ambitious goal in Africa's most populous country, where thousands of babies are born with neonatal jaundice each year.

Nevertheless, Mr Anderson is determined to defy the odds.

“The work doesn't stop until every baby is protected from neonatal jaundice,” he says.