'He battles on like a warrior': Cork boy helping to raise awareness of 'butterfly skin'

A four-year-old Cork boy living with epidermolysis bullosa (EB), also known as Butterfly Skin, is helping to raise awareness about the condition among his classmates.

Bobby Clifford, from Gurteenroe in Bantry, was diagnosed with EB just months after his birth.

The genetic illness causes extremely painful blisters to erupt at the slightest touch, and in the most severe cases, such as Bobby’s, multiple bandage changes are needed every week to prevent infection.

Shortly after Bobby’s birth in January 2019, medics noticed that patches of skin were missing from his fingers and ankles, and three days later blisters were found inside his mouth.

“After a few months of hospital and GP visits, Bobby was diagnosed with recessive dystrophic epidermolysis bullosa,” said his mother Grace Clifford, explaining that “he now undergoes long, excruciating bandage changes several times a week”.

He has recently started preschool at Coomhola Highscope near Bantry, and to help him explain his EB and why his classmates must be careful at playtime, national charity Debra produced a booklet titled Bobby’s Story, which he shared with his classmates.

“The book has helped Bobby tell his story of life with EB through the eyes of a child — his classmates now know why he wears bandages at school and why he has to be extra careful in the classroom and the yard,” explained Grace.

“He gave one to everybody in his class, and the parents and children were amazed, some admitting they didn’t know about EB.”

Although his life revolves around hospital visits and bandage changes, she said her son is always smiling, “and battles on like a warrior”.

She added: “Bobby is a soccer fanatic and needs double bandaging of the whole body when playing, to protect his fragile skin, but the smile on his face is worth it.”

Grace said Debra has been an extraordinary support to them, and she hopes that a cure for EB is found.

People can help support research by donating to debra.ie