AN EIGHT-YEAR-OLD boy with skin as fragile as a butterfly wing refuses to let his agonising condition stop him smiling and is now bravely helping others for a national campaign.

Mason White has the most severe form of rare genetic skin condition epidermolysis bullosa (EB) which means his skin blisters and tears both internally and externally under only the slightest touch.

But despite that, Mason, from St Leonards, is a happy and confident boy who refuses to take time off school.

His family is now urging people to support Jeans for Genes Day on September 22, the annual fundraising campaign for Genetic Disorders UK, the national charity that helps individuals and families affected by a genetic disorder.

Mason was diagnosed with the condition at birth when he had no skin on his right leg or left foot.

Mum Kerry said: "The midwife put him on my chest and the first thing I noticed was that his right leg looked like raw steak and was folded back – I later found out this was because his condition caused pain when his legs touched each other even in the womb, so he had been holding his leg away from the other one. He had no skin on his left foot, either. I handed him back to the midwife and asked her what was wrong. But the hospital hadn’t seen anything like it before. They wrapped gauze bandages around his leg, which was the worst possible thing to do because the bandage became embedded."

"The hospital sent pictures to Great Ormond Street Hospital, who suspected what the problem was and sent a nurse specialising in EB.

"The first thing she had to do was get the bandage out. That was horrific because Mason was screaming and screaming in pain – I had to leave him with the nurse in the end as it was too upsetting. The nurse explained what they thought the condition was and warned us not to go online because we’d read very scary things."

His condition worsened and at the age of six months he coughed up the lining of his oesophagus.

Kerry explained: “I had to stick it to the side of his face to stop him choking on it on the way to hospital then it started to come out of his nose.”

He was on life support for two days and medics warned he may not make it however he was given a gastrostomy and had his stomach sewn up to prevent the acid going up into his oesophagus and causing blistering.

As Mason grew older there were constant challenges and Kerry and husband Rod were spending two hours a day changing his dressings and had to pop blisters that formed on his skin and up to three hours a day bandaging his body to protect his delicate skin. They also took it in turns to sleep with Mason so they could stay awake to check he wasn’t rubbing his face in his sleep and his hands had to be bandaged so he could pick things up.

“Hurting my baby was horrendous and it was worse when he was younger because we couldn’t explain why we had to do it. We felt unprepared for some of the complications but I think the doctors knew we’d be overwhelmed if they told us everything that could happen to Mason.” These include the eyes blistering and children can lose their sight.

Two years ago Mason had surgery on his hands because his fingers were contracting, affecting his ability to pick things up and will need further surgery in the future.

Kerry said for Mason, who is obsessed with football and a fan of AFC Bournemouth, the future is uncertain. “Life expectancy can be anything between eight and 30. The skin is so weak so people with EB can get aggressive skin cancers. But I always tell myself you never know what will happen in life, to anybody. And we take each day as it comes.

“I hope there may be scientific developments that will help Mason. A couple of years ago he used to ask ‘why me?’ and ‘will I get better?’ That was really hard. But he doesn’t ask those questions anymore.

“He loves school – he never has time off, even though he can, and is three years ahead of his age in reading and top of the class in maths – he’s very grown-up for his age because of all he’s been through. The school is amazing. They include him in everything.”

Kerry said she has recently got Mason, who is a pupil at Parley First School, a mobility scooter so he can get around in the playground and because he can’t play rugby, he was involved making a video of the match and presenting it instead.

“Some people don’t realise how fragile he is. In the past he’s been left with embedded fingertips in his flesh from being picked up and one wipe could take his whole cheek off.

“Despite what Mason goes through, he comes through fighting every time and more importantly he never stops smiling.

“You see your child suffer and you realise life is too short and it’s important to treasure every day, every smile, every word and every moment as life can change so quickly.

“Mason is an amazing little boy. He’s one hell of a character and proves to us nothing, not even his EB will stop him.

“If love was a cure Mason would be cured. He is so loved by everyone.

“He appreciates what it is like to be a fighter and so do I and we will never ever give up on this fight.”