It was the moment his parents never dreamed they would see.

Little Mason White is home from his first day at school, his smart uniform covering his heavily bandaged limbs.

For mum and dad Kerry and Rod, it’s a miracle he is here today after battling a life-threatening rare genetic condition since birth.

While for his classmates bumps and scrapes are part of everyday life, Mason’s skin tears and blisters both externally and internally with the smallest of knocks. It is so severe he sits inside a sheepskin at school.

Mason is among the country’s small army of ‘butterfly children’ born with the most severe form of epidermolysis bullosa (EB). But though his skin is as delicate as a butterfly’s wings, his spirit is anything but fragile. Today he has suffered a huge excruciating blister simply from leaning on his desk but, typically, it doesn’t stop him joking.

“I’m like The Hulk because he’s the strongest,” the five-year-old says, reaching for his favourite action figure.

Tears well up in Kerry’s eyes because she knows her son is stronger than any superhero.

“Butterflies, they seem fragile and delicate and although this is true, the story about my little butterfly Mason is somewhat different,” she says.

“Although Mason’s skin is like a butterfly’s wing, underneath all that, he is the bravest and happiest little boy I know. He amazes me every day.”

The incurable condition EB, which affects around 5,000 people in the UK, means Mason is missing the sticky protein in his skin called collagen 7 which binds layers of skin together Born with no skin on parts of his body, his family didn’t know what his future would hold.

Kerry, 34, a dance teacher, was unable to hold him for weeks and was was unable to have any skin to skin contact for two years. “For the first few years I just thought we were going to lose him. It was one thing after the next,” says Kerry.

Mason had a series of operations which means though he cannot eat or drink, he can be fed directly through a tube in his tummy. His parents and carers spend up to three hours a day bandaging his body to protect his delicate skin and cover the excruciating blisters.

His condition is so severe his parents have to watch over him while he sleeps because simply rubbing his face can cause his thin skin to tear, leaving an open wound. But despite the fact there is little anyone can do to stop the pain, Mason is always happy.

“To see your child in constant pain is heartbreaking. Despite what Mason goes through, he comes through fighting every time and he never stops smiling.”

But there is still little awareness about the condition. People have asked Kerry if she has burnt her son, photos of his skin are removed by Facebook and the family often face people staring at him so they are forced to carry leaflets with them about the condition. For that reason Kerry, who is an ambassador for the charity DEBRA which has supported them, is determined to raise awareness about the condition.

“EB children are very precious. They bring you so many tears yet so much joy and pleasure. If love was a cure Mason would have been cured. He is so loved by everyone. I capture so many beautiful pictures of my little butterfly spreading his wings and growing.

“He’s my little champ. He appreciates what it is to be a fighter and so do I and we will never ever give up on the fight.”