Sickle cell illness is the fastest-growing genetic situation within the UK however some really feel the sickness, which largely impacts black individuals, is not taken significantly.
Nurse Gildé Nsianguana has the situation and has interviewed the mother and father of Evan Nathan Smith for Radio 1 Newsbeat.
After being denied oxygen, Evan known as 999 from his hospital mattress however died shortly after. An inquest discovered that if hospital employees had a greater understanding of the situation his life may need been saved.
Evan’s mum, Betty, tells Newsbeat that Evan “led a very normal life”, and he loved studying and watching soccer.
You can watch the complete documentary Sickle Cell: Fighting for Care right here.
Produced by Kesewaa Browne and Woody Morris