大象传媒

The family of a four-year-old boy say they are desperately trying to prevent their son from living his life under ultraviolet lights.

Ismail Ali, from Luton, has a rare liver disease called a Crigler-Najjar, otherwise known as "lifetime jaundice". It is a condition which affects only 100 people across the world.

To treat his condition, Ismail has to sit on a bed lit by UV phototherapy lights for 20 hours a day, which he has been doing since he was one-week-old.

Mother Shahzia said an enzyme is missing in his liver which "would break down the bilirubin in his blood".

That then causes a build up of toxins which the family say they've been told could cause him to "go deaf, [suffer] brain damage or slow organ failure".

Reporter Sophie Sulehria went to visit Ismail.