An 11-year-old sickle cell sufferer says there should be more support for people with the disease, following the death of Richard Okorogheye, a 19-year-old student who went missing after he had spent a year shielding with the condition.
While being home-schooled by her single mother Lisa, Miai Phillip has been campaigning to raise awareness about the illness that affects around 15,000 people in the UK, who are mainly from African-Caribbean backgrounds.
Miai is calling on the medical profession and wider society to better understand the disease, "just like people know about cystic fibrosis, diabetes or cancer", she says.
Directly addressing health professionals, she says: "They shouldn't be saying, 'I haven't heard of this before, or I don't know what that is', you have been in this profession, so know your profession."
Sickle cell anaemia is a hereditary disease in which the body produces unusually shaped red blood cells that clump together, blocking blood vessels.
This results in painful episodes called sickle cell crises, which can last for weeks. In some cases, these can lead to organ failure and even death.
Sitting alongside her mother, Miai describes how sickle cell can sometimes make it hard for her to enjoy her childhood because she has to constantly monitor her temperature and water levels while ensuring she takes her medication.
"I always have to be level," says the youngster from south London.
"Sometimes I can be looking forward to something like having a sleepover or going to watch a movie, then all of that can change within a second and I can end up in hospital on a blood transfusion.
"It's frustrating because you just feel like you want to be able to live, to be carefree."
The deaths of Richard Okorogheye and another sickle sufferer Evan Nathan Smith have served as painful reminders for campaigners and activists about how the disease remains poorly understood.
Mr Okorogheye's mother, Evidence Joel, has said his condition was dismissed by the police when she reported him missing a day after his disappearance, while an inquest earlier this month found that Mr Smith, 21, rang 999 from his hospital bed while in crisis after being refused oxygen and would not have died if medical staff recognised his symptoms and offered him a blood transfusion sooner.
"I don't have any connection with either of the parents, but I cried, I felt their pain," says Miai's mother, Lisa Phillip.
Despite the daily difficulties of living with sickle cell, Miai will not allow the disease to stop her from living out her dreams of becoming an actress.
She has already featured in the Netflix series Zero Chill and a Vodafone advert alongside menswear model David Gandy.
Her message for other young sickle cell sufferers is to "keep being strong, keep being tall and talk to people".
"I know it's hard sometimes, but just continue doing what you do," she adds.