A French teenager’s sickle cell disease has been reversed using a pioneering treatment to change his DNA.
The world-first procedure at Necker Children’s Hospital in Paris offers hope to millions of people with the blood disorder, who are mostly in Africa.
Sia Evelyn Nyandemo, originally from Sierra Leone, runs a campaign group in the UK to support sickle cell sufferers.
She spoke to the BBC’s Newsday programme about caring for her daughter who has the disease:
Sickle Cell has taken the lives of two of our children.
We have lost two girls.
One of our daughters, the eldest, is living with it. And that has impacted us so much that we live with fear because of the outcome of having sickle cell.
We know that some people will live up to a certain age but every now and then she is in crisis and we know when the child is in crisis it affects her organs.”