A tiny baby born with skin is so fragile his parents are afraid to cuddle him needs to be wrapped like a mummy to protect him from deadly infections. The slightest touch causes Giorgio Evans-Lobato to have blisters all over his body and leaves him “looking like Freddy Krueger”.
The first time Dominic Evans, 37, held his newborn son he felt sure “something was seriously wrong” when he saw skin missing from the little one’s back, head and left leg. Two weeks after Giorgio’s birth in June 2022, specialists from London’s famous Great Ormond Street Hospital revealed the baby had a rare and incurable condition which affects just 5,000 people in the UK called junctional epidermolysis bullosa (EB), or “butterfly skin”, which causes agonising blisters.
The cruel version of EB affecting little Giorgio also causes internal blistering to his organs and means he requires 24-hour care. Determined to help Giorgio survive and go on to lead the best life possible, Dominic quit his job as an electrician to help Giorgio’s mum Michelle Lobato, 43, look after him full time at their home in Chichester, West Sussex.
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 suited to Giorgio’s needs. Dominic said: “We have been told by the doctors and specialists that he has a low percentage chance of surviving his first two years of life so we are hoping we can do everything possible to get him through this.”
Remembering the moment he first met his little boy, he said: “When I first saw him, I knew something was wrong. He was looking like Freddy Krueger with all of the blisters.
“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.
“It’s 24 hours a day, so I had to quit my job and sold my BMW car, and we’re just about scraping by with Universal Credit. These months have been so tough on us, but I can’t even imagine how tough it’s been on him. I can see the pain in his eyes.”
But the dad also added lovingly: “Those moments where he is smiling and happy are the best days of my life – and we want to do everything to give him the best chance to live a normal life.”
Giorgio was born by Caesarean section at St Richard’s Hospital in Chichester on June 16, 2022 at 12.30pm, weighing 6lbs. It was a “healthy” pregnancy, according to Dominic, and the couple had no idea before Giorgio’s birth that he had the “horrifying” condition caused by a faulty gene.
Remembering the moment he met his baby, Dominic said: “This 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.”
Medics 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 over to Great Ormond Street Hospital revealed the tot had EB.
Dominic added: “It was completely devastating. I’d seen documentaries about the condition and I was scared.” Struggling to make ends meet on universal credit, the family-of-three are now tucked into a tiny one-bedroom apartment in Chichester.
Every day, Giorgio needs a four-hour bath, before his parents pop his blisters and drain the liquid then cover his entire body in creams that create an artificial skin which acts as a protective layer. He is then wrapped with special bandages that help to heal the skin quickly and cushion him from anything he might touch.
Dominic said: “Our entire lives have been flipped upside-down. Every moment we have is devoted to making sure Giorgio is safe.”
The condition has left Giorgio in constant agony and needing painkillers daily, and it is often so unbearable that Dominic has to give him a dose of morphine to help ease the pain. And while most parents look forward to their children’s first words, Dominic fears the day Giorgio will be able to tell him “just how much pain he is in”.
Dominic said: “He is in excruciating pain every single day – I can see it in his eyes. When he can speak, I will be able to find out where he is hurting.
“But you can see the trauma in him. When he looks up at me, he doesn’t understand why it’s happening to him.
“I’ve never been so emotional in my entire life. I’m so scared for when he speaks and tells me just how much pain he is in.”
Dominic says the family is now trying to raise extra funds so they can move into a bigger home that can accommodate Giorgio’s needs. With no cure for EB the tot will probably need to use a wheelchair and have constant treatment throughout his life.
His 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. Dominic said: “We have all of our medical supplies under the kitchen table, there isn’t room anywhere.
“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.”
But despite the many challenges the young family has already faced, Dominic is hopeful they can give the little boy the best life possible. Dominic said: “We are going to get him through this. He is our son, and we will fight to make sure he is safe and he lives the best life he can.
“We want him to be as normal a boy as possible and, if we can do everything for him, he can feel things are more possible for him. The moments where he is pain-free and smiling away are just incredible. Those moments 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.”
Michelle said seeing little Giorgio in pain each day has “destroyed” her as she feels helpless. She said: “I feel sad, but I have to be strong for him because he needs me. I go to church with him to pray for him.
“Seeing him go through all of this has destroyed me. But I love him so much, and I feel I can’t help him. We want to give him everything.”
DEBRA, a national charity and patient support group for people living with EB, said the condition causes people to live in “constant and debilitating pain” and specialist healthcare support is often required. In a statement, they said: “Epidermolysis Bullosa (EB), is an incredibly painful genetic skin blistering condition. 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.” They added: “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.”
You can donate to the fundraiser here
For more stories from where you live, visit InYourArea
