A book about a soccer-mad Cork Bobby who lives with recessive dystrophic EB, is helping to raise awareness about the condition among his classmates.
Four-year-old Bobby Clifford from Gurteenroe, Bantry, Co. Cork, was diagnosed with epidermolysis bullosa (EB), also known as Butterfly Skin, when he was a few months old.
EB is a genetic illness which causes painful blisters to erupt at the slightest touch – and, in the worst cases like Bobby’s, frequent bandages changes are required to prevent the blisters from becoming infected.
Although the youngster faces an exhausting battle against pain every day, he started pre-school earlier this year.
But before attending Coomhola Highscope Preschool near Bantry, EB charity Debra produced a brightly coloured booklet titled ‘Bobby’s Story’ for him to share with classmates.
The book, which features an illustration of Bobby on its cover and images of his family and teachers on the inside pages, explains what it is like to like to live with EB and why Bobby needs to wear bandages in class.
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 his life with EB through the eyes of a child,” said Bobby’s mum, Garce Clifford.
“His classmates now know why he wears bandages at school and why he has to be extra careful in the classroom.
“He gave one to everybody in his class and the parents and children were amazed, with some admitting they didn’t know about EB.”
Grace Clifford, 36, explained that medics spotted patches of skin were missing from Bobby’s fingers and ankles when he was born after a normal pregnancy in January 2019.
Three days later, blisters were found inside her new-born’s mouth.
“After a few months of hospital and GP visits, Bobby was diagnosed with recessive dystrophic epidermolysis bullosa,” the mum-of-four said.
“He now undergoes long, excruciating bandage changes several times a week.”
Although Bobby’s 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 so worth it.”
Grace said she is now 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 heart-breaking thing in the world to watch someone you love go through so much and not be able to fix it for them.”