A bespoke booklet about a four-year-old boy who lives with a distressing skin disease is helping to raise awareness about the condition among his classmates.
Bobby Clifford, from Gurteenroe in Bantry, Co Cork, 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 like Bobby’s, multiple bandage changes are needed every week to prevent infection.
Despite an exhausting battle against pain every day, the soccer-mad youngster 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 Manchester United-supporting schoolboy is supported at home by parents Grace and Darren, and sister and brother Mia and Charlie.
Ms Clifford said: “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.
“He gave one to everybody in his class and the parents and children were amazed, some admitting they didn’t know about EB.”
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.
Ms Clifford said: “After a few months of hospital and GP visits, Bobby was diagnosed with recessive dystrophic epidermolysis bullosa.
“He now undergoes long, excruciating bandage changes several times a week.”
She said her son is always smiling, even though his life features regular hospital visits and bandage changes.
She added: “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.”
Ms Clifford said she is desperate for a cure to be found and said the public can help fund medical research by donating to Debra.
She added: “Debra have been an extraordinary support to us as a family.
“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.”
– Members of the public can find out more about EB and donate to Debra via debra.ie.
