Sickle cell illness is the fastest-growing genetic situation within the UK however some really feel the sickness, which principally impacts black folks, is not taken significantly.
Nurse Gildé Nsianguana has the situation and has interviewed the dad and mom of Evan Nathan Smith for Radio 1 Newsbeat.
After being denied oxygen, Evan referred to 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 have been saved.
Evan’s mum, Betty, tells Newsbeat that Evan “led a really regular life”, and he loved studying and watching soccer.
You can watch the complete documentary Sickle Cell: Fighting for Care here.
Produced by Kesewaa Browne and Woody Morris