‘We take it day by day with son’s skin condition’

There is currently no cure for the condition, or an effective treatment to prevent the skin problems caused by EB, according to the Great Ormond Street Hospital for Children.

In severe cases of EB such as Leo’s, blisters become widespread, and blistered areas develop into wounds that can be difficult to heal.

Leo’s parents said they had to be at his side constantly, as he could have flare-ups every 20 minutes.

Mr Statham, 35, added: “The prognosis was two years. He’s hit two years, but we’ve been told we’ve got to take it day by day.”

Although his parents said Leo had defied expectations of doctors when he was diagnosed, they “still live in fear”.

Mrs Statham added: “Every time he closes his eyes, he is at risk. He has had corneal abrasions three times in his little life; once he couldn’t open his eyes for two weeks.”