21 January 2024
By Tom Collins
tom@TheCork.ie
A book about a soccer-mad schoolboy who lives with a distressing skin disease, is helping to raise awareness about the condition among his classmates.
Bobby Clifford, four, with mum Grace. ‘Bobby’s Story’, produced by EB charity Debra, explains to his classmates and teachers what it is like to live with the rare and painful skin condition EB, and why he needs to wear bandages in class. Pic: Grace Clifford.
Four-year-old Bobby Clifford from Gurteenroe in Bantry, was diagnosed with epidermolysis bullosa (EB), also known as Butterfly Skin, just months after his birth.
The genetic illness causes extremely painful blisters to erupt at the slightest touch – and, in the worst cases such as Bobby’s, multiple bandage changes are needed every week to prevent infection.
Although the Manchester United-supporting youngster faces an exhausting battle against pain every day, he has started pre-school at Coomhola Highscope near Bantry.
To help him explain his EB and why he needs to wear bandages, national charity Debra produced a brightly coloured booklet titled ‘Bobby’s Story’, which he has shared with his classmates.
His pals are also told that while Bobby is just like every other little boy who loves football, they must be careful at playtime in case he hurts his fragile skin.
“The book has helped Bobby tell his story of life with EB through the eyes of a child,” said mum Grace Clifford, 36.
“His classmates now know why he wears bandages at school and why he has to be extra careful in the classroom and the yard.
“He gave one to everybody in his class and the parents and children were amazed, some admitting they didn’t know about EB.”
Bobby is supported at home by parents Grace and Darren and sister and brother Mia and Charlie.
Shortly after Bobby’s birth in January 2019, medics spotted patches of skin were missing from the tot’s fingers and ankles.
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 Grace.
“He now undergoes long, excruciating bandage changes several times a week.”
Although his life revolves around hospital visits and bandage changes, she said her son is always smiling.
“He’s slowly learning the things he can and cannot do, and battles on like a warrior.
“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 she is desperate for a cure to be found and said the public can help fund medical research by donating via debra.ie.
“Debra have been an extraordinary support to us as a family,” she said.
“My hope is that a cure for EB is found.
“It is the most heartbreaking thing in the world to watch someone you love go through so much and not be able to fix it for them.”
To find out more about EB, visit debra.ie.