MOST parents look forward to hearing their child’s first words, but for Dominic Evans, he is terrified of the day his son Giorgio will be able to tell him “just how much pain he is in”.
Giorgio Evans-Lobato was born by c-section in June, but what should have been “the best moment of my life”, was one of pain and anguish for Dominic and mum Michelle Lobato, 43.
Meeting his newborn son for the very first time, Dominic, 37, an electrician was “horrified” by what he saw.
He noticed parts of Giorgio’s skin were so fragile that sections were missing, and instantly knew “something was seriously” wrong.
“He had these massive blisters all over his face, his back and his foot,” said Dominic.
“He was looking like Freddy Krueger with all of the blisters.”
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It makes it practically impossible for Dominic and Michelle to cuddle or kiss their baby.
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 over to Great Ormond Street Hospital revealed the tot 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.
Giorgio’s version also causes internal blistering to his organs and means he requires 24-hour care.
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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.”
He added: “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.”
Dominic and Michelle have been told by doctors and specialists that Giorgio 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.”
Giorgio was born 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.
“When you see open sores like that you just think about how much pain he’s in, and it broke my heart.”
Dominic added: “It was completely devastating. I’d seen documentaries about the condition and I was scared.”
I can see the pain in his eyes
Determined to help Giorgio survive and go on to lead the best life possible, Dominic quit his job to help Michelle look after their son 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 better suited to Giorgio’s needs.
“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.”
Struggling to make ends meet, the family-of-three are now tucked into a tiny one-bedroom apartment in Chichester.
There is barely enough space for them to treat Giorgio’s blisters each morning.
Every day, the little one requires 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.
Giorgio 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.
As Giorgio will likely be wheelchair-bound and is likely to need constant treatment throughout his life as there is currently no cure for EB, Dominic has been advised by the charity DEBRA, which supports people living with the condition, that his family needs a treatment room and disability adaptations to their home.
Dominic said: “We’re in such a tight space that it doesn’t feel safe for Giorgio, as any slight touch causes him to blister and potentially have a deadly infection.”
What is EB?
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.
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.”
But despite the many challenges the young family have already faced, Dominic is hopeful they can give their 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.
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“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.”
You can donate to the fundraiser here: www.gofundme.com/f/giorgio-eduardo-evanslobato-eb-housing-fund
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