IN many ways, little Mason White is like any other eight-year-old.

He is football mad, loves golf, school, playing on his PS4 and Xbox, has lots of friends and adores his puppy.

But Mason, from Ringwood, has a rare genetic condition, Epidermolysis Bullosa (EB), which means his skin is so delicate that just brushing against it causes it to blister and tear.

Having skin as fragile as a butterfly wing means Mason’s parents, Kerry and Rod, have to be careful about giving him a cuddle and have to spend two to three hours a day changing his dressings and popping blisters.

And he has undergone so many operations it would be impossible to keep count - less than three years ago he had 13 weeks of weekly surgery on his hands and he is set to undergo the process again at the end of the year as his fingers have begun to fuse inwards again, and he has lost the use of his thumbs.

He struggles to walk as his feet are so painful, and he has lost the toes on his right foot.

His mobility varies depending on the state of his feet. He can walk short distances and sometimes even kick a soft football around in his garden, but he is largely reliant on a mobility scooter.

Touching him can leave finger marks and blisters on his skin. The condition affects him internally as well as externally - when he was a baby, he coughed up his oesophagus.

EB is incurable and affects around 5,000 people in the UK, with around 1,000, like Mason, suffering the most severe form of the condition.

Sufferers are missing the important sticky protein in their skin called collagen 7 which binds layers of skin together.

“The skin is so weak so people with EB can get aggressive skin cancers,” says Kerry.

“But I always tell myself you never know what will happen in life, to anybody. And we take each day as it comes.

“When he was little, worrying about the future used to really upset me. But now we focus on how far he’s come. They said he would never walk and look at him now.”

And Mason is such a happy child that, Kerry says, he lifts everyone’s spirits.

“His personality keeps us going,” she says.

“He loves life. I don’t know how he does it sometimes, with all the pain that he’s in, but he’s a really happy little boy. He keeps us smiling.”

Kerry says that a couple of years ago Mason started to ask “why me?” and “will I get better?”, which was really hard, but he he seems more accepting of his situation now.

He also went through a phase of seeming ashamed when people stared at him, but Kerry is happy to say that now he holds his head up high.

“He has got over the fear of everyone staring,” she says.

“It was a really hard stage. You expect children to stare, but adults sometimes say terrible things. I think it’s because his skin can look really sore and they’re a bit shocked by it and blurt something out.

“I remember being in a chemists with him once and the person behind the counter said ‘did Mummy throw you down the stairs?’

“You see people looking at him and looking at us and judging - wondering if we have hurt him.”

This is one of the reasons that Kerry is keen to raise awareness about Mason’s condition, not only to raise funds but also so that people are less surprised when they see him.

“We do charity work and he’s appeared on TV and in newspapers so people quite often recognise him. He likes that. He says ‘I’m famous’.”

Kerry, Rod and Mason are currently promoting Jeans for Genes, the national charity that supports individuals and families affected by a genetic disorder.

This year’s annual Jeans for Genes fundraising day takes place on September 22, with people being encouraged to wear jeans to school or work and make a donation, with money raised funding the work of the charity and providing grants to organisations for projects that aim to transform the lives of children with genetic disorders.

The family is also supporting the EB pop - a water balloon challenge on social media - to raise money for the Sohana Research Fund.

Kerry says she closely follows research into EB, but the family discourage people from talking about cures around Mason, as they don’t want to give him false hope.

“His friends were doing the water balloon challenge and saying ‘we’re doing this to cure Mason,’” says Kerry.

“We explain to him that we probably won’t be able to cure it completely but we hope he will be able to do a bit more.”

Mason’s skin today is as delicate as it was when his was small, but life is easier now as he understands when his is being bathed, bandaged and having his blisters popped that it is to help him, whereas when he was younger he used to just cry in pain, which was very distressing for the whole family.

And, Kerry adds, he accepts damaging his skin as a consequence of doing the things he wants to do.

“He is so determined,” she says.

“His reading and maths ability is three and a half years ahead of his age, so he’s very bright, and he wants to do everything. He knows his boundaries but he steps over them. We find ourselves saying ‘no, Mason,’ all the time.

“With some things, he knows he might get hurt but he deals with the consequences later.

“It can be hard on us, as we have to do the repair work.”

Kerry says that while she doesn’t have the same degree of raw emotion about Mason’s condition as when he was younger, it can still be tough.

“I don’t think you ever come to terms with it, but I used to be so upset,” she says.

“Emotionally, now, it’s up and down.

“When we’re at home with all the family there, it’s lovely, and we get on with it,” says Kerry. Mason’s 13 year old sister, Georgia, is also at home, while Rod also has three older children.

“When we’re out it can be difficult. The other day we went to a friend’s barbecue, and all the children were running round and going in the pool, but he can’t do that.

“But he doesn’t want to stay at home. He loves socialising. He’s a real people person. Sometimes he suggests we all go out for dinner, even though he can’t eat, because he loves socialising.”

The family focus on living in the moment but do also plan fun trips and treats - partly to have something to look forward to, and partly because doing anything different takes so much organisation.

Last year they went on holiday to Florida and had to take eight suitcases of dressings for Mason.

“We had a villa with its own private pool and he went swimming for the first time, and absolutely loved it,” says Kerry.

“We had to spend three hours on his dressings afterwards, but it was worth it for the look on his face when he was in that swimming pool.

“He just wants to live life to the full. He’s such a happy little boy.”

Mason White and his family support the Sohana Research Fund. Find details about how to take part in their #EBpop water balloon challenge on their website.

Jeans for Genes Day 2017 takes place on Friday September 22. Sign up for your free fundraising pack now at the Jeans for Genes Day website.