Most parents look forward to hearing their children’s first words, touching their skin and kissing them, but for Briton Dominic Evans, he is terrified of the day his son Giorgio will be able to tell him how much pain he is feeling due to the rare disease he suffers from, according to the newspaper, “The Sun.” ” British.

Giorgio Evans Lobato was born in June, but what should have been the best moment in parents’ lives when meeting their newborn son for the first time was pain and anguish for Dominic, 37, and his wife, Michelle Lobato, 43, as the father was horrified by what He saw it, after noticing that parts of Giorgio’s skin were so fragile that some were not there, and knew at once that something was wrong.

“He had these massive pimples all over his face, back and feet… He looked like Freddy Krueger with all the pimples,” Dominic said. Because of this condition, it became impossible for Dominic and Michelle to hold or kiss their baby.

Doctors initially believed that the injuries occurred during childbirth, and later believed that it might be a bacterial infection from the amniotic sac, but blood tests that were sent to Great Ormond Street Hospital revealed that the child suffers from a rare and incurable condition that affects only 5,000 people in the Kingdom. united called junctional epidermolysis bullosa (EB), or “butterfly skin”, which causes painful blisters.

Giorgio’s injury also causes internal sores on his organs, which means he needs 24-hour care. “He’s in excruciating pain every day,” Dominic said. “We never expected him to have such a horrific condition, so it was incredibly moving and we went from pure joy to fear, confusion and anxiety,” he added.

Baby with butterfly skin disease

Doctors and specialists, Dominic and Michel, told Giorgio that Giorgio has a low chance of surviving the first two years of his life, so they hope they can do everything we can to get through this. Giorgio, at St Richards Hospital, in Chichester, was born on 16 June 2022 at 12:30 p.m. and weighs 6 lbs.

In order to take care of the child, Dominic quit his job and sold his car to help his wife, Michelle, take care of their son full time at their home in Chichester, West Sussex, determined to help Giorgio survive and continue to live the best life possible. work, they have created a mass online campaign on GoFundMe They ask for public donations so that they can move into a new home that better suits Giorgio’s needs.

Because Giorgio will likely need to be wheelchair-bound, he will likely need lifelong treatment because there is currently no cure for EBhas advised the Foundation DEBR The charity, which supports people with the condition, said Dominic that his family needed treatment and room conditioning in their home.

british couple

She said DEBRwhich is a national charity and patient support group for people living with EBThe condition causes people to live in “persistent, debilitating pain,” and healthcare professional support is often needed, explaining that the disease is a painful hereditary blistering condition that causes the skin to blisters and rips at the slightest touch, and the person has fragile skin like wings Butterfly, often referred to as “butterfly skin”.

The charity says, “It can affect EB On the hands and feet only, and in severe cases, it affects any part of the body, including the appearance of ulcers in the eyes and internal organs, and often needs EB To professional healthcare and support, which can include specialized dressings, gel pads, changing tables, smooth growth, low-friction shoes, etc., plus they benefit from expert advice from dermatologists, pediatricians, and nutritionists, to help Who is managing the situation as best as possible?

A British father holds his son with a rare disease