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

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

He has cerebral palsy and needs care for the rest of his life. He can’t talk or walk and is fed through a tube attached to his stomach.

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

“My father weighs about 12kg [26lb]. He is doing well,” said the founder of this center, Nonye Nweke, when I visited.

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

Although there is no official data, cerebral palsy is believed to be one of the most common neurological disorders in Nigeria. In 2017, a professor of medicine at the University of Lagos said 700,000 people have the condition.

For many of those living with cerebral palsy in the country, their condition was caused by something common among newborns – infantile jaundice.

This is caused by the accumulation of bilirubin, a yellow substance, in the blood, which means that babies’ skins have a yellow tinge.

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

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

Babies are exposed to ultra-violet light to dissolve excess bilirubin in their red blood cells. The treatment takes several days depending on the severity.

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

Any treatment for infant jaundice “should occur within the first 10 days of life, if not later [the condition] it can cause permanent brain damage and severe brain damage,” said Prof Ezeaka.

What makes matters worse is that this West African country does not have the resources to care for those with mental disorders. There are only three cerebral palsy centers, all privately operated, in Nigeria, which has a population of over 200 million.

Ms Nweke – a single mother – founded the Cerebral Palsy Center after struggling to provide for her daughter, Zimuzo.

“When I took him to kindergarten [centre]they asked me to take her back because other mothers will take their children out. As a mother, I have to say it was very painful,” Ms Nweke told the BBC.

Zimuzo is now 17 years old, and Ms Nweke’s Cerebral Palsy Center provides round-the-clock support for others with similar experiences.

On the day I visit, colorful playtime mats and toys are neatly arranged on the floor. Mickey Mouse and his friends chat on the wide screen television in the living room.

A dozen children, some as young as five years old, stared at the TV, their bright spot ignored for a moment. They are all motionless and speechless.

At lunch time, the caregivers help the children to eat. Some eat liquid food through tubes attached to their stomachs.

Carefully and slowly, the caretakers support their heads with pillows and push the contents of their syringes into the tubes.

Babies are fed every two hours and need regular muscle massage to prevent stiffness.

But those 12 are lucky enough to receive free care at the Cerebral Palsy Center, which is funded solely by donors.

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

But taking on more young people will require more financial support. The cost of caring for someone in an institution is at least $1,000 (£790) a month – a large sum in a country where the national minimum wage is $540 a year.

“As a mother, I must say it’s frustrating. You have moments of depression, it gives you heartache and it’s very expensive – it’s actually a very expensive disease to deal with at birth,” Ms Nweke said.

“Also, it makes you distance yourself from people because you don’t talk about the same things. They talk about their children, walking, enjoying those children’s moments. You don’t do that. It makes you sad,” he added.

Ms Nweke explains that she took Zimuzo to the orphanage.

A few months after taking her new daughter home, Ms Nweke noticed that Zimuzo was not growing at the same rate as her children. He was examined at the hospital and diagnosed with cerebral palsy.

Ms Nweke was told that she could take Zimuzo, who was only a few months old, back to the orphanage and adopt another child, but she refused.

“I decided to keep him and started researching what the disease was all about, the treatment and the kind of care my child would need – he is my life.

“I was also told by the doctors that he would not recover after two years. Well, here we are – 17 years later,” said a smiling Ms Nweke.

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

Ms Nweke also says that the common belief in the area that children born with disabilities are spiritually damaged or bewitched leads to discrimination.

Some children with mental disorders – especially in rural areas of Nigeria – are called witches. In some cases, they were thrown out of 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 – has recently started operations in Lagos.

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

“We are equipping health facilities at the primary, secondary and tertiary levels with equipment to treat jaundice, mainly light boxes, but also testing and screening equipment,” Toyin Saraki, who oversaw the launch, told the BBC.

Project Oscar, supported by consumer health company 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 laws to try to prevent jaundiced babies from developing brain damage.

In a country where the public health system is overloaded, the government does not say anything about this disease, although it has praised the objectives of the Oscar project.

Treatment of childhood jaundice is much cheaper than the cost of lifelong care, doctors say.

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 other children from going through what he went through.

“Disabled people should not be taken for granted,” he told the BBC.

She works to ensure that all newborns are screened for newborn jaundice, and, with the support and courage of mothers, midwives and medical professionals, to ensure that there is better understanding and faster treatment.

However, achieving this is a major goal in the highly populated African country, where thousands of babies are born each year with neonatal jaundice.

However, Mr Anderson is determined to defy the odds.

He says: “The work does not stop until all babies are protected from newborn jaundice.