Even though Babatunde Fashola, affectionately referred to as Baba, is 22 years impaired, he’s lower than 70cm (2ft 4in) high.
He has cerebral palsy and calls for lifelong help. He can neither discuss nor proceed and is fed by way of a tube hooked up to his abdomen.
As a child, he used to be rejected through his oldsters however 10 years in the past, he discovered a house on the Cerebral Palsy Centre within the Nigerian town of Lagos.
“Baba weighs about 12kg [26lb]. He is doing well,” the power’s founder, Nonye Nweke, tells me after I consult with.
Ms Nweke and her group of workers paintings across the clock to aid him and alternative kids dwelling with everlasting mind injury.
Even though there’s a insufficiency of professional information, cerebral palsy is thought to be one of the ordinary neurological issues in Nigeria. In 2017, a clinical educator from the College of Lagos stated 700,000 public had the status.
For lots of of the ones dwelling with cerebral palsy within the nation, their status used to be led to through a ordinary phenomenon amongst newborns – neonatal jaundice.
That is led to through a build-up of bilirubin, a yellow substance, within the blood, which means the small children’ skins have a yellow tinge.
Educator Chinyere Ezeaka, a paediatrician on the Lagos College Instructing Sanatorium, tells the BBC that greater than 60% of all small children be afflicted by jaundice.
Maximum small children get well inside of days. Extra vile circumstances want additional clinical intervention – or even after the status is well treatable.
Youngsters are principally uncovered to ultra-violet brightness to dissolve the huge bilirubin of their pink blood cells. The remedy lasts a couple of days relying at the severity.
Alternatively, in Nigeria this remedy is frequently no longer in an instant to be had, which is why the rustic is without doubt one of the 5 with probably the most neurological issues led to through untreated jaundice on this planet, consistent with information from the International Fitness Group (WHO).
Any remedy for neonatal jaundice “must occur within the first 10 days of life, else [the condition] could cause permanent brain damage and severe cerebral palsy”, says Prof Ezeaka.
To assemble issues worse, the West African nation lacks amenities to take care of the ones with neurological issues. There are simply 3 cerebral palsy centres, all privately run, in Nigeria, which has a society of greater than 200 million.
Ms Nweke – a unmarried mom – arrange the Cerebral Palsy Centre later suffering to seek out aid for her personal daughter, Zimuzo.
“When I took her to a day-care [centre], they asked me to take her back because other mothers would withdraw their children. As a mum, I must say it was quite devastating,” Ms Nweke tells the BBC.
Zimuzo is now 17, and Ms Nweke’s Cerebral Palsy Centre supplies full-time aid for others with homogeneous studies.
At the date I consult with, vibrant playtime mats and toys are smartly organized at the flooring. Mickey Mouse and his pals speak on a wide-screen tv in the living room.
Twelve kids, some as younger as 5, gaze on the TV, their shining shape not noted for a pace. They’re all motionless and non-speaking.
At lunchtime, caregivers aid the children consume. Some soak up liquified meals via tubes hooked up to their stomachs.
In moderation and slowly, the carers aid their heads with pillows and push the contents in their syringes into the tubes.
The kids are fed each and every two hours and require ordinary muscular massages to restrain stiffness.
However they’re the fortunate 12 receiving isolated help from the Cerebral Palsy Centre, which is funded solely through donors.
The power has an extended ready checklist – Ms Nweke has gained greater than 100 programs.
However taking up extra kids will require excess monetary aid. The price of taking good care of any individual on the centre is no less than $1,000 (£790) a generation – a abundance quantity in a rustic the place the nationwide minimal salary is ready $540 a day.
“As a mum, I must say it’s quite overwhelming. You have moments of depression, it gives you heartaches and it is quite expensive – in fact it’s the most expensive congenital disorder to manage,” Ms Nweke says.
“And then of course, it keeps you away from people because you don’t discuss the same things. They are talking of their babies, walking, enjoying those baby moments. You are not doing that. You are sad,” she provides.
Ms Nweke explains that she followed Zimuzo from an orphanage.
A couple of months later taking her pristine daughter house, Ms Nweke realised Zimuzo used to be no longer creating in the similar means as the youngsters round her had been. She used to be assessed at a health facility and recognized with cerebral palsy.
Ms Nweke used to be informed she may just hurry Zimuzo, who used to be after simply a couple of months impaired, again to the orphanage and undertake some other child rather, however she refused.
“I decided to keep her and I began researching what the disorder was about, the treatment and type of care my child would need – she’s my life.
“I used to be additionally informed through the docs she gained’t are living past two years. Neatly right here we’re – 17 years upcoming,” says a smiling Ms Nweke.
A lack of awareness and adequate medical support 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 damaged or bewitched leads to stigmatisation.
Some children with neurological disorders – mostly in Nigeria’s rural areas – are labelled witches. In some cases, they are abandoned in prayer houses or cast out of 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 began operating in Lagos.
The project is named after Vietnamese-born British disability advocate, Oscar Anderson, whose untreated jaundice caused his cerebral palsy.
“We’re equipping condition amenities on the number one, secondary and tertiary ranges with the apparatus to regard jaundice, essentially brightness grounds, but in addition detection and screening apparatus,” Toyin Saraki, who oversaw the launch, tells the BBC.
Project Oscar, backed by consumer health firm Reckitt, is training 300 health workers in Lagos. The hope over the first year is to reach 10,000 mothers, screen 9,000 children and introduce new protocols to try and prevent babies with jaundice from developing cerebral palsy.
In a country where the public health system is overstretched, the government has little to say about the disorder, although it lauded the Oscar project’s goals.
Treatment for neonatal jaundice is significantly cheaper than the cost of lifelong care, doctors say.
First launched in Vietnam in 2019, Project Oscar has helped about 150,000 children in the Asian country.
Mr Anderson, 22, says he wants to prevent other children experiencing what he has been through.
“Society with disabilities aren’t to be underestimated,” he tells the BBC.
He is working to ensure screening for every newborn infant for neonatal jaundice, and, with the support and courage of mums, midwives and medical professionals, ensure there is better understanding and quicker treatment.
However, achieving this is a hugely ambitious goal in Africa’s most-populous country, where thousands of babies are born each year with neonatal jaundice.
Regardless, Mr Anderson is determined to defy the odds.
“The paintings doesn’t block till each and every child is secure in opposition to neonatal jaundice,” he says.