Ciara recently started a petition calling for more research into the condition and after reaching 10,000 signatures, she received a response from the Department of Health and Social Care (DHSC).
The DHSC, which has also been contacted by the BBC for comment, said it had already committed £1.075m over five years for projects specifically related to EB.
It said research had so far covered advanced treatments, symptom management, supportive care and better care co-ordination.
But Ciara worries her son’s rare condition could get “left behind” in the world of research.
“It feels like families like ours are the ones being left to connect the dots. It just doesn’t feel good enough.
“If enough people knew how devastating this condition is, something would have to happen because no-one, no human in the world, would stand by and allow children to suffer from birth for the rest of their lives.
“If the system in place is working, why are families like ours still having to work so tirelessly to raise awareness, contact researchers and campaign for anything that might improve our children’s quality of life?”
Tony Byrne, chief executive officer of DEBRA UK, says research is “not an abstract ambition” for people with butterfly skin, but “the route to less pain, better treatments, and the hope of a cure”.
“This petition matters because dedicated, ring-fenced government investment would give researches greater certainty, help promising discoveries move into UK clinical trials and ensure rare conditions are not overlooked,” he adds.
Despite how painful the condition is and the need for more research, Ciara says she has finally started to believe that Ralph can live a happy life.
“He is just the most stubborn, funny, resilient little boy. He loves simple things. When the trees move in the wind, it makes him so happy,” she says.
“Ralph can have the most awful wounds on his stomach or his elbows and he’s still rolling over trying to get toys. He doesn’t let anything stand in his way. He’s so fragile, but so desperate to move.
“Despite everything he’s so happy, he’s so smiley. He won’t let anything hold him back.”
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