// BBC UK NEWS — CRONACA
I was told my baby boy's skin was as fragile as glass
Six-month-old Ralph was diagnosed with junctional epidermolysis bullosa (JEB) at a few days old
When Ciara's son Ralph was born, he had skin missing from his hands and feet. Doctors said he was as fragile as glass.
Ralph was diagnosed with junctional epidermolysis bullosa (JEB), also known as butterfly skin, at a few days old.
Ciara and her partner Lewis had to become experts in the rare genetic disorder, which causes skin to tear or blister at the slightest touch.
"We were new parents, we had never heard about this before and we had basically been told my son was like glass," Ciara, from Arlesey in Bedfordshire, says.
The 30-year-old mum is now calling on the government to increase funding and research into rare skin conditions, with the hope of one day finding a cure.
Doctors from Great Ormond Street Hospital taught Ciara and her partner how to manage the condition
Five minutes after Ralph was born, following what Ciara describes as a normal pregnancy, she noticed "big raw patches" on his hands and feet.
"My partner Lewis went to the NICU [neonatal intensive care unit] with him and left me with a picture of him," she says.
"I spent the whole time looking at that picture questioning what on earth was going on."