Parents of baby with ‘butterfly skin’ too afraid to cuddle him for fear of infection

The parents of a baby born with a rare condition has skin so fragile his parents are afraid to cuddle him for fear it could cause him to suffer a deadly infection.

The slightest touch leads Giorgio Evans-Lobato to break out in blisters all over his body, with the newborn needing to be wrapped like a mummy to protect him from potentially life-threatening infections.

When Dominic Evans, 37, from Chichester, West Sussex, held his baby son for the first time he was concerned “something was seriously wrong” after noticing skin missing from the newborn's back, head and left leg.

Two weeks after Giorgio’s birth, in June 2022, specialists from Great Ormond Street Hospital diagnosed the infant with a rare and incurable condition, which affects just 5,000 people in the UK.

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Epidermolysis bullosa (EB), or "butterfly skin", is the term used to describe a number of rare genetic conditions which cause the skin to blister and shear in response to minimal friction and trauma.

Giorgio is living with Junctional EB, which also causes internal blistering to his organs and means he requires 24-hour care.

“We have been told by the doctors and specialists that he has a low percentage chance of surviving his first two years of life,” his dad reveals.

“So we are hoping we can do everything possible to get him through this.”

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Giorgio was born by Caesarean section at St Richard’s Hospital in Chichester on June 16, 2022 at 12.30pm, weighing 6lbs, following a healthy pregnancy.

Recalling the moment he first met his little boy, Evans says: "It should have been the best moment of my life, but I was horrified by what I saw.

“He had these massive blisters all over his face, his back and his foot.

“When you see open sores like that you just think about how much pain he’s in, and it broke my heart.”

Doctors initially believed the injuries were caused during the birth, and later thought it could have been a bacterial infection from the amniotic sac.

But blood tests sent to Great Ormond Street Hospital revealed the baby had EB.

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“It was completely devastating," Evans adds. "I’d seen documentaries about the condition and I was scared.

“We never expected him to have such a horrendous condition, so it was incredibly emotional.

"We went from pure joy to fear and confusion and worry," he adds.

Every day, the youngster requires a four-hour bath, before his parents pop his blisters and drain the liquid then cover his entire body in creams, which create an artificial skin acting as a protective layer.

Giorgio is then wrapped with special bandages that help to heal the skin quickly and cushion him from anything he might touch.

The condition has left Giorgio in constant agony and needing painkillers daily, with his parents often having to give him a dose of morphine to help ease his discomfort.

“Our entire lives have been flipped upside-down," Evans continues. "Every moment we have is devoted to making sure Giorgio is safe.”

Giorgio's mum, Michelle Lobato, 43, says seeing her son in pain each day has “destroyed” her as she feels helpless.

“I feel sad, but I have to be strong for him because he needs me," she says.

"I love him so much, and I feel I can’t help him.

“We want to give him everything.”

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In order to help provide the care that Giorgio needs Evan has quit his job as an electrician to help look after him full time.

With both parents unable to work, they have set up an online crowdfunder on GoFundMe asking for public donations so they can move into a new home better suited to Giorgio’s needs.

The family has been advised by the charity DEBRA, which supports people living with the condition, that they need a treatment room and disability adaptions to their home.

“We have all of our medical supplies under the kitchen table, there isn’t room anywhere," Evans explains.

“We’re in such a tight space that it doesn’t feel safe for Giorgio. Any slight touch causes him to blister and potentially have a deadly infection.”

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DEBRA says EB causes people to live in “constant and debilitating pain” and specialist healthcare support is often required.

“Epidermolysis Bullosa (EB), is an incredibly painful genetic skin blistering condition," the charity says in a statement. "It causes the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, it is often referred to as ‘butterfly skin’.

“EB can affect the hands and feet only or, in the most severe cases, any part of the body, including blistering on the eyes and internal organs.

“People living with EB live in constant debilitating pain and in severe cases it can be fatal.

“People living with EB often need specialist healthcare and support, which can include specialist bandaging, gel pillows, changing tables, seamless baby grows, reduced friction shoes etc. plus they benefit from specialist advice from dermatologists, podiatrists, nutritionists, to help them manage the condition as best as they can.”

Despite the many challenges the family have already faced, Evans is hopeful they can give their little boy the best life possible.

“We are going to get him through this," he adds. "He is our son, and we will fight to make sure he is safe and he lives the best life he can.

“If we can do everything for him, he can feel things are more possible for him.

“When he is pain-free and smiling away it is just incredible.

"Those times are so precious and I love every second.

“He is so strong. It’s beautiful to see him happy and smiling. Those are my happiest moments.”

Additional reporting PA Real Life.