Her mum Amanda Turner, 37, said: “The condition is scary because when Sophie’s blood sugar is low she we see a complete change in her. It’s like looking at a completely different child. She gets very hungry and gets the shakes. She has to take extra snacks to school and her hair is also very long because of the treatment. Children have said things to her about her hair without realising it and it isn’t a nice thing to have, but the school have been very good. This new trial has been brilliant and we have now been able to stop the Diazoxide, which is fantastic. We just hope that this treatment will soon be available to all children with congenital hyperinsulinism.”