JoelSamuel, 14, from Oldbury, is at the start of his journey.
His sickle cell disease leaves him in excruciating pain.
Like thalassemia, the disease also involves red blood cells and is usually a lifelong condition, affecting patients’ joints and leaving them feeling weak and tired.
JoelSamuel’s stem cells have recently been collected at Birmingham Children’s Hospital.
They will be edited and in six months he will have chemotherapy before his edited cells are returned to him.
He dreams of being able to enjoy sport. Attempts to do that now make him ill.
“I get tired and then the next day I get sick and I won’t be able to go to school,” he said.
He explained that he was initially nervous about having the treatment, but also feels hopeful.
“I think it’s good to make me better, so I can go and do stuff that takes my energy,” he said.