While most parents can’t wait to hear their child’s first words, Dominic Evans is terrified because then his son, Giorgio, will be able to tell him “how much he’s in pain”.
Born by cesarean section on June 16, 2022, Dominic, 37, retains a “horrible vision” from the first meeting with his son, the electrician having been terrified by the appearance of his little boy’s skin…
A shock at first sight
When Dominic saw Giorgio, he immediately noticed that parts of his skin were so fragile that parts of it were missing. He understands that something “is really wrong”. “He had these huge blisters all over his face, back and foot,” Dominic told The Sun newspaper. Michelle and Dominic find themselves virtually unable to cuddle or even kiss their son.
A rare and incurable disease
When they examine him, the doctors attribute these injuries to childbirth and then think that Giorgio may be suffering from a bacterial infection of the amniotic sac. But blood tests ultimately reveal that their child is suffering from a rare and incurable disease affecting only 5,000 people in the UK: junctional epidermolysis bullosa (EB), or “butterfly skin”. A disease causing agonizing blisters on the body and, in Giorgio’s case, internal blisters on the organs, resulting in the little boy’s constant need for care.
Low chance of survival
“He is in terrible pain every day, I can see it in his eyes,” lamented Dominic. “When he can talk, I will finally know where he hurts. But you can see the trauma in him. When he looks at me, he doesn’t understand why this is happening to him,” he said. Within minutes, the couple goes from pure joy to fear, confusion and worry. Giorgio’s parents learn that their child has a low percentage chance of surviving his first two years of life. “So we hope we can do everything we can to get him through this ordeal,” hoped Dominic.
During the pregnancy, the couple had no idea of the future physical condition of their child, caused by a faulty gene. “When you see open wounds like that, you just think of the pain he feels and it broke my heart,” confided moved the dad. “It was completely devastating,” he continued. Determined to help his son survive and lead the best possible life, Dominic quit his job to help Michelle care for their child full-time at their home in Chichester, West Sussex. Unable to work, the couple set up an online crowdfunding asking for public donations so they could move into a house better suited to Giorgio’s needs. “It’s 24 hours a day, so I had to quit my job and sell my BMW car, and we’re about to settle with Universal Credit,” Dominic noted. “These months have been so hard for us, but I can’t even imagine how hard it has been for him,” he said.
Long and permanent care
Every day, Giorgio needs a four-hour bath before his parents burst his blisters and drain the fluid, then cover his body in cream, creating a sort of “artificial skin” that acts as a protective layer. He is then wrapped in special bandages that help his skin heal faster while protecting it from contact. “Our lives have been completely turned upside down,” said Dominic. “Every moment we have is spent making sure Giorgio is safe,” he said. For Giorgio, the pain is such that his parents must frequently administer a dose of morphine to relieve him.
fight for their child
For Giorgio, the future looks difficult, he will probably be in a wheelchair and will need constant treatment throughout his life, as there is no cure for EB. Despite the many challenges the young family have already faced, Dominic hopes they can give their baby boy the best possible life. “He is our son and we will fight to make sure he is safe. We want him to be as normal a boy as possible and if we can all do for him, he can feel that things will be possible for him. “Those moments when he is pain free and smiling are amazing and so precious. I love every second. These are my happiest moments,” he concluded.