Congenital hyperinsulinism causes low blood sugar and treatment drug called Diazoxide makes her hair grow fast.
Sophie Fieldhouse’s long golden hair grows just like the fairytale heroine Rapunzel.
It causes low blood sugar and one of the only treatments is a drug called Diazoxide, which makes her hair grow much quicker than normal.
Her beautiful blonde locks almost reach to the ground.
Now Sophie, from Failsworth, Manchester, has taken part in a new trial using fish oils.
And the treatment has proved so successful she is no longer taking Diazoxide.
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.”
The disease affects one in 50,000 children.
“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.”