Features / Health
‘What can a child who barely spoke in complete sentences teach us about living?’
Oke Ewule has lived many lives.
Born in 1970s Walthomstow, east London, he and his family returned to Nigeria, their country of origin, when he was two-and-a-half.
He then returned to London at the age of 19 before moving onto Bristol, becoming an IT consultant and then starting his own record label, Ekobeats (“I was among the people who started Afrobeats“). He later became a husband and then a father to a daughter, Omasi, born at Southmead Hospital in 2010.
But when he and his wife returned to hospital two years later, to check on the health of their second-born child Chizi, Oke heard news that brought his ever-changing life to a standstill.
“The words that followed shattered our world into a million pieces,” Oke writes in his new book Chizi’s Light.”Neuroblastoma, a rare and aggressive form of childhood cancer…as the gravity of the diagnosis sank in, we found ourselves grappling with an impossible reality. How could this be happening?”
At this point, in 2012, Chizi was only three months old. What followed was a series of chemotherapy treatments that were successful enough to allow Chizi to leave hospital by the end of the year.
A year passed without issue. But, towards the end of 2014, Chizi developed a fever.
Doctors dismissed Oke and his wife Chioma’s concerns and said their son simply had a viral infection.
A few days later and Chizi hadn’t recovered so Oke and Chioma called 111, who referred them to Cossham Hospital in Kingswood.
A paediatrician, working as part of the BrisDoc Healthcare Service which was operating out of the hospital at the time, said Chizi had hand, foot and mouth disease.
A week later, Chizi was baptised at Tolentino Catholic Church in Easton.
Chizi died of Stage 4 Acute Myeloid Leukaemia eight days after his baptism.
Doctors in the weeks prior had misdiagnosed his symptoms.
Oke published Chizi’s Light in November 2024, on the tenth anniversary of Chizi’s death – photo: Seun Matiluko
As I sit with him at Grounded Cafe in St George, Oke remembers Chizi’s final moments: “My head was down…His mum was on the other side, praying. I said to him, don’t be scared.
“The angels are with you now, you can go with them.
“The next I heard was Chioma screaming: ‘He’s nodding, he’s nodding his head’.”
Oke and I are meeting, a few days after what would have been Chizi’s 13th birthday, to talk about Oke’s new book, Chizi’s Light: Cancer Took His Life, Love Kept His Light, published in Chizi’s memory.
Oke says Chizi – whose full name, Chinumezi, means “God is with me” in the Ikwerre language of West Africa – was always “full of smiles” and “very cheeky”.
He adds: “Even in a hospital bed he would smile at you. He loved to dance and he loved to jump. He was always hopping.
“I remember once when we went to the Science Museum and he spent all day just hopping, hopping, hopping.”
The day after Chizi died, Oke went to work. He was working as a consultant at the time – if he took time off he wouldn’t get paid. Even when you might wish it would, life never stops.
Weeks after, Oke was struggling to accept reality: “There was a period I actually didn’t believe he left. I would still go to Asda and buy clothes for him.”
However, in the years that followed Chizi’s death, he managed his grief in different ways.
The family (which by 2020 included two more children as well as Oke and Chioma’s oldest child, Omasi) made sure to visit Chizi’s grave regularly and ensured his pictures were always on the wall in their house in St George.
Oke even created mugs and T-shirts with Chizi’s face on them.
He tells me he plans to visit Chizi’s grave, which is only a few minutes away from Church Road, after we finish our interview.
Oke Ewule’s book shares how he and his family coped after Chizi died, aged two-and-a-half – photo: Seun Matiluko
A few years ago, Oke’s dad began to worry that he had become too fixated on Chizi’s death.
Oke’s father said he needed to “let him go and just forget about him”.
But Oke replied: “Daddy, if someone else had told me this, I would be really angry. But it’s you, so I know you’re not doing this maliciously.
“Yes, we’ve still got Chizi’s pictures in our house. We have absolutely no intention of taking them off because they’re not hurting anyone.
“He’s a member of our family. The fact he’s not here doesn’t mean we take all his stuff and chuck it away.”
But even though Oke made sure Chizi was forever present in his life, he still felt like he was not doing enough to remember him. He had questions for God too.
He didn’t understand why Chizi was born only to die two years later. But one day “the pin dropped”.
Oke realised he needed to “take the initiative and do something to understand why Chizi came into our lives”.
So, he wrote and self-published Chizi’s Light to share Chizi’s story with the world.
The book is 203 pages, with a hundred of those pages taken up by pictures of Chizi with his family. We see Chizi playing with toys, visiting St George Park and smiling as a newborn at Southmead Hospital.
Part of the proceeds of sales from the book will go to Children with Cancer UK.
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Founded in 1987, Children with Cancer UK provides support to families who have children with cancer and also funds research into childhood cancer.
In the UK, just under 2,000 children are diagnosed with cancer each year.
Oke hopes as many people as possible read Chizi’s Light, remember Chizi’s name and learn more about what it’s like to live with childhood cancer and child bereavement.
When Chizi died, Oke and his wife Chioma received some pamphlets from the hospital about how to cope with his death.
Oke says: “I wish this (Chizi’s Light) would have existed then. Because this would have been a lot more meaningful than giving me a leaflet with phone numbers.”
Oke knows “there’s no blueprint for grief” but hopes Chizi’s Light will help others on their grief journeys.
He particularly hopes the book will help fathers who have lost children.
Oke shares: “My wife would never know…But I do cry quite regularly.
“There’s a lot more literature on grief with regards to women. Of course, women are generally more expressive.
“The difference is that men, by default, are expected to hold it down. They’re not expected to show emotions.”
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Oke knows, for example, that sharing his perspective helped his father (Chizi’s grandfather) change his views on grieving Chizi.
Although Oke’s dad had once advised him to try and forget about Chizi, when Oke later went to Nigeria to visit him he discovered Chizi’s pictures everywhere in his father’s house.
Upon seeing this, Oke says he smiled to himself, quiet in the knowledge he had helped his father become more expressive in his grief.
As Oke writes on the last page of Chizi’s Light: “What can a child who barely spoke in complete sentences teach us about living? About courage? About finding joy in the darkest places? Everything.”
In a statement, Dr Kathy Ryan, medical director at Brisdoc Healthcare Services, said:
“Our deepest condolences are with the Ewule family. We acknowledge the deep impact their loss will have had on the family and are considering this matter with the utmost seriousness.
“As such, will be undertaking a review of the care we provided at the time and will share any learnings with our staff and relevant partners.
“We would also like to reassure everyone that patient safety remains our absolute priority at Brisdoc Healthcare Services.
“This review will help us to not only understand the care we provided but also to ensure that we continue to deliver the highest standard of care to future patients.”
Chizi’s Light: Cancer Took His Life, Love Kept His Light is available for purchase on Amazon. A portion of all sales will go to Children with Cancer UK
All photos: Seun Matiluko
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