One woman’s mission is to help her daughter and others

Although Babatunde Fashola, affectionately known as Baba, is 22 years old, he is less than 70cm (2ft 4in) tall.

He has cerebral palsy and requires lifelong care. He cannot talk or walk and is fed through a tube attached to his stomach.

He was abandoned by his parents as a child, but 10 years ago he found a home at the Cerebral Palsy Center in Lagos, Nigeria.

“Baba weighs about 12 kg (26 pounds). He’s doing well,” the facility’s founder, Nonye Nweke, tells me when I visit him.

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

Despite the lack of official data, cerebral palsy is considered one of the most common neurological disorders in Nigeria. In 2017 a professor of medicine at the University of Lagos said 700,000 people were suffering from the disease.

For many cerebral palsy patients in the country, their condition was caused by a common phenomenon among newborns – neonatal jaundice.

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

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

Most children recover within a few days. More severe cases require further medical intervention – and even then the condition is easily treatable.

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

However, such treatment is often not immediately available in Nigeria, which is why the country has the top five rates of neurological disorders caused by untreated jaundice in the world, according to 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 Professor Ezika.

To make matters worse, the West African country lacks resources to care for people with neurological conditions. In Nigeria, with a population of over 200 million, there are only three private cerebral palsy treatment centers.

Ms Nweke, a single mother, set up the Cerebral Palsy Center after struggling to find support for her own daughter Zimuza.

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

Zimuza is now 17 and Ms Nweke’s Cerebral Palsy Center provides ongoing support for others with similar experiences.

On the day of my visit, colorful rugs and toys are neatly arranged on the floor. Mickey Mouse and his friends are talking on the wide screen TV in the living room.

Twelve young people, some as young as five, stare at the television, their bright surroundings momentarily ignored. They are all motionless and do not speak.

At lunchtime, caregivers help the youngster to eat. Some take liquid food through tubes attached to the stomach.

Careful and slow, educators support your head with pillows and push the contents of the syringes into the tubes.

The young are fed every two hours and require regular muscle massage to prevent stiffness.

But these are the 12 lucky ones who receive free care at the Cerebral Palsy Center, which is funded entirely by donors.

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

But to accept more young people, additional financial support will be needed. 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 mom, I have to say it’s pretty overwhelming. You have moments of depression, it gives you heartache and it’s quite expensive – in fact, it’s the most expensive congenital condition to treat,” says Ms Nweke.

“And of course it keeps you away from people because you’re not discussing the same thing. They talk about their children, take a walk, enjoy those childhood moments. You don’t do that. You are bored,” she adds.

Ms Nweke explains that she adopted Zimuz from an orphanage.

A few months after taking her new daughter home, Ms Nweke realized that Zimuza was not developing like the children around her. She was examined in the hospital and diagnosed with cerebral palsy.

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

“I decided to leave her and started researching the cause of the disorder, the treatment and the 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,” Ms. Nweke smiles.

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

Ms Nweke also says that the widespread local belief that children with birth defects are spiritual or bewitched leads to stigmatisation.

Some children with neurological diseases – mostly in rural Nigeria – are called witches. In some cases, they are left in houses of worship or expelled from 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 launched in Lagos.

The project is named after the British advocate for the disabled Vietnamese Oscar Anderson, whose untreated jaundice caused cerebral palsy.

“We equip primary, secondary and tertiary care facilities with equipment to treat jaundice, primarily light boxes, as well as detection and screening equipment,” Toyin Saraki, who led the launch, tells the BBC.

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

In a country with an overstretched public health system, the government has little to say about the disorder, although it has praised the aims of Project Oscar.

Doctors say that treating jaundice in newborns is much cheaper than the cost of lifelong care.

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

Mr Anderson, 22, says he wants to prevent what he went through happening to other children.

“People with disabilities should not be underestimated,” he tells the BBC.

It works to ensure that every newborn is screened for neonatal jaundice and, with the support and courage of mums, midwives and health 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.

Despite this, Mr. Anderson is determined to defy the odds.

“The work will not stop until every baby is protected against neonatal jaundice,” he says.