'Mason is stronger than any superhero'

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 typical of his strength of character, it doesn’t stop him grinning and 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, 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.

“Back when Mason was diagnosed we were told he would never walk but school was my biggest fear but he’s proved he can do anything.”

The incurable condition EB which affects around 5,000 people in the UK means Mason is missing the important 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 who lives in Ringwood, was unable to hold him for weeks and was unlike most mums and their newborns, was unable to have any skin to skin contact for two years, instead under the care of Great Ormond Street specialists.

“For the first few years I just thought we were going to lose him. It was one thing after the next,” says Kerry.

Aged six months, Mason ended up in intensive care after he coughed up the lining of his oesophagus.

Thanks to his medical team, 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.

Today his face is marked with scabs, he’s awaiting operations because his hands are beginning to fuse inwards and his feet are so painful, he’s never been able to wear shoes. 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. There is also a risk of blisters forming on his eyes if he rubs them and he could potentially lose his sight.

Mason cannot be lifted up under his arms in the normal way. In the past he has been left with embedded fingerprints in his flesh from being picked up and once medical tape torn off from his cheek ripped his skin.

And when he’s outside he has to sit on blankets to avoid any sharp edges.

But despite the fact there is little anyone can do to stop the pain, Mason is always happy.

“Mason’s condition means his skin will blister or tear at the most delicate of touch or if any friction is applied. To see your child in constant pain is heartbreaking.

“Some people don’t realise how fragile he is. 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.”

But despite Mason’s incredible bravery, there is still little awareness about the condition.

People have approached Kerry and asked her 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.

“We just got back from Euro Disney and it was heartbreaking. So many people looked down at him and turned their noses up like he was contagious or diseased.

“He said ‘why are people staring at me?’ We had bought him a massive cuddly toy so I said it was that, but he’s not silly. He’s very switched on. As a parent that’s hard.”

For that reason Kerry, who is an ambassador for the charity DEBRA which has supported them, is determined to raise as much awareness as possible about the condition and fundraise through a series of upcoming events in the hope of finding a cure.

“EB children are very special and precious. They bring you so many tears yet so much joy and pleasure.

“They make what you thought was so important in life seem not so important and make you realise never to take anything for granted.

“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 is one hell of a character and proves to us nothing, not even his EB will stop him.

“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.

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

Events for DEBRA

Kerry is hosting a number of upcoming fundraising events organised by DEBRA Hampshire Ladies Committee.

These include a VIP evening on a ship, an 80s night and a fight night in London. AFC Bournemouth have also pledged to raise £5,000 for the charity. DEBRA provides a team of nurses and social care staff who work directly with people affected by EB. It also commissions research into the condition to find treatment, and ultimately, a cure for EB.

For information on upcoming events search DEBRA Hampshire Ladies Committee on Facebook or go to debra.org.uk