Despite a few run-ins with the law and a short prison stint, Royce ‘Ducky’ Scarlett was loved by his friends and family in Highfields where he grew up. But aged 22, just as he was on the road to rehabilitation, his life was cut short by a rare form of cancer commonly found in carriers of the sickle cell trait.
Royce's mother, Micheline Scarlett, says that at the time of her son's death in 2005, there was a lack of research into sickle cell and the form of cancer that took her son's life. As September marks sickle cell awareness month, Micheline has since vowed to keep her son's legacy alive.
Through her son's story, the 69-year-old wants other people to aware of the link between sickle cell - a genetic condition which disproportionately impacts the black community - and cancer that Royce developed. Patients with sickle cell disease are also at an increased risk for blood cancers, especially leukemia making awareness even more important.
READ MORE: What is sickle cell disorder and why does it impact large numbers of the black community?
“The girls swooned after Royce," Micheline recalled. "I was always getting someone new turning up at the door looking for Royce."
Where he studied at Judgemeadow Community College in Evington he was known as the biggest class clown, and he was a fit and active youngster. An avid football fan, he took the field for local teams across the city late into his teenage years.
“He was born in 1983, at a time where they didn’t test for sickle cell, so I didn’t know that he had the trait, and no one on his dad's side of the family had it either.
"I took him to the dentist at around the age of 10 to have a tooth taken out, but he ended up kicking the dentist because he doesn’t like needles. Because of how hard Royce kicked the dentist, he didn’t end up having his tooth taken out, and I had to take him to the Royal Infirmary instead.”
Because of Royce’s mixed heritage, the nurses said that they would have to do a sickle cell test, as those with the trait who are going under anaesthesia, would need to be under a watchful eye. The test for the trait came back with a positive result.
Fast forward to August 2005, a now 22-year-old Royce was admitted into hospital with kidney stones, but they passed after a couple of days, and he was sent home. But in November of the same year, he began to experience intense pain in his side, but the doctors initially thought he had sustained a gym-related injury.
Royce’s health suddenly began to deteriorate and he was taken into hospital again, but this time, he complained of chest pains and shortness of breath. After running some tests, the doctors found cancerous cells attached to his lungs, but the doctors told Micheline that they believed that the cancer had spread from another part of his body.
The doctors scanned his testicles where they thought the cancer may have spread from. "When he came back from the scan in a wheelchair, he said ‘Mum, the man said I've got the best pair of balls he’d ever seen’ and we laughed together.”
“It suddenly dawned on me that it couldn’t have come from his testicles, because testicular cancer is normally very treatable. They did another scan which showed that he had a big mass on his kidneys."
Royce was diagnosed with Renal Medullary, a rare cancer of the kidney that predominantly affects young people of African descent who carry the sickle cell trait or have sickle cell disease. “I’d never heard of it, and the doctors didn’t have much knowledge either," said Micheline.
"The hospital was on the phone to America because Royce was the second person in the UK to have it. There were only around 55 people in the world to have it at the time.”
The doctors told Micheline that there was nothing that they could do for her son. After a week of being in hospital, Royce was transferred to a specialist cancer ward where he spent his final moments.
“I was in denial. I said, this is my Royce, he's going to fight this, but he just got weaker by the minute.
"I even had to start hoisting him and giving him a bath. He couldn’t breathe properly and had to be put on oxygen.
“He couldn’t lie down, the only comfortable position was for him to sit up - so the nurses propped him up in bed. On the day of his death, I went to the day room to sleep for a few hours, then came back to find him asleep.
“I remember saying 'Royce if you are not going to get better, don’t wake up'. But he was fast asleep and didn't hear me.
“Around 20 minutes later, Royce jumped up out of nowhere, collapsed on the floor and died. I held him for a whole hour and I told him to go to his grandad who had died two years prior.
"Life is cruel. I know he would have made something of himself - my boy was on the road to turning his life around, but he never got that chance."
After her Royce's death, Micheline said she really struggled to come to terms with it, but it motivated her to do extensive research to find out more about the cancer that had stolen her boy. She discovered that some of the symptoms that Royce experienced such as kidney stones and the pain in his side were all signs of Renal Medullary.
“If I'd known more about sickle cell and its links to cancer earlier, when he had the kidney stones, then maybe I could have flagged to the doctors that they needed to check for this cancer. There have been times where I blamed myself, but I just didn't know about it and neither did the doctors.
"Ultimately more awareness needs to be raised and more research needs to be done in this country, not just regarding sickle cell but also Renal Medullary. America is miles ahead in regards to research, so it would be nice to see the UK catching up."
READ NEXT:
Lord Mayor's bid to raise awareness of 'debilitating' disorder that affects black community
New research on lung cancer 'a wake-up call to the dangers of air pollution'
These NHS surgeries are at the heart of innovative patient care in Leicestershire
Teen felt unusually tired and lost his appetite before learning he had leukaemia
